My mother is 85 and was told she has stage 3 cancer. She doesn't seem to understand exactly what is going on and is passive. We're not that pleased with her doctors. I don't want to be pushy, but how can we help her?A.
Challenges that may affect older adults and their ability to make health care decisions include how they process information, how they cope with the stress of the diagnosis, and how their medical team communicates with them. With this in mind, family support can play an important part in your mother’s care. I’d start by asking your mother if she would like your help, and if so, what areas she would like help with. This might include meeting with her medical team to discuss her treatment plan or helping her prepare for her appointments.
Questions to ask about her treatment include:
- What is the recommended treatment and possible side effects?
- How could treatment affect other co-existing health issues?
- Is the goal longer survival, which may mean a more intensive treatment, or is it quality of life?
Ways to involve and organize your mother include:
- Take notes at her appointments or ask if you can record the discussion
- During the appointment, ask her if she has questions
- Repeat and review the information after the appointment, allowing her time to process information
- Keep a calendar to record her appointments
- Use a notebook to keep track of symptoms and side effects
- Create a file for all paperwork related to her diagnosis, including copies of important records
- Compile a current list of all her medications and phone numbers/addresses of all of her health care providers.
Your mother’s medical team is one of the most important aspects of her care, and as a health consumer she has every right to receive quality care. It is essential that older adults and their loved ones be able to openly and honestly discuss their care with their doctors and any potential difficulties that may arise. For more guidance please read, “Doctor, Can We Talk? Tips for Communicating With Your Health Care Team”. If she is not comfortable with quality of care she is receiving, she may need to explore other options. Though this may seem daunting, your mother’s primary care doctor or even a local hospital can provide her with referrals.
My husband has been diagnosed with Stage IIIA non-small cell lung cancer that had spread to the mediastinal nodes. I have heard that the five-year survival rate for this type of cancer is 15% or approximately two years. Is this correct?A.
The American Society of Chest Physicians indicates that the five-year survival rate for Stage IIIA non-small-cell lung cancer (NSCLC) ranges from less than 10% to 40% and is dependent on the extent of mediastinal lymph node involvement. NSCLC type (squamous cell, adenocarcinoma or large cell carcinoma) may also influence survival rates.
It is important to keep in mind that the primary purpose of staging a cancer is to make sure that the correct treatment protocols are utilized, rather than to predict survival. Survival rates do not represent the experience of any individual lung cancer patient. They are statistical figures which are comprised of data collected on thousands of cancer patients and then calculated to develop the average or median computation for that very large group.
Many factors influence lung cancer survival including a patient’s age, overall state of health prior to diagnosis, healthy lifestyle, compliance to treatment regimens and response to treatment. Very often, newly diagnosed patients who join CancerCare’s lung cancer patient support groups have poor survival prognoses, yet survive for significantly longer periods than anticipated.
One valuable coping strategy we have learned from these group members over the years is “staying in moment.” Using our physical and emotional strengths on today’s issues, rather than trying to solve the unknowns of the future, appears to be one of the most effective ways of living each day with lung cancer.
You can also find comprehensive information about lung cancer on CancerCare’s website, www.lungcancer.org.
I'm worried that a few side effects from my cancer treatment won't go away. Do you know how long they might last?A.
Experiencing lingering side effects after cancer treatment is over is common. These side effects can be especially frustrating when you expect to feel better as soon as treatment is over. Most side effects gradually lessen with time as your body recovers from treatment. Share your concerns and questions about continuing side effects with your medical team and what can be done to address them. I’d recommend keeping a detailed daily log of the side effects you are experiencing—this makes it easier to report details to your doctor. Our Connect® Education Workshop, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit can help you prepare for your appointments.
Connecting with others in a support group for people who are post-treatment can be helpful. A support group is a place to share tips and ways of coping with other survivors who might be experiencing similar lingering side effects. We offer support groups over the telephone, online and in person (New York City area). You can also speak with a social worker who will locate groups in your area.
Finally, read our publications to learn ways to cope with side effects.
I have stage 4 cancer and after 5 years of receiving chemotherapy, I'm being told there are no more treatment options for me. Because I survived so long with a terminal diagnosis, some people in my family don't seem understand how serious this is. How can I help them understand?A.
I am sorry that you have been told that there are no other options to treat your cancer. It seems that you have been on quite a journey over the last 5 years which likely took an incredible amount of courage and energy. It’s possible that your brave outlook allowed your family to think that the cancer would remain under control for a long time to come.
It is not uncommon for people to deny the seriousness of cancer, including people with cancer as well as their loved ones. While denial is often thought of in a negative way, it can be a useful mechanism that protects us from the sometimes intense emotional pain involved with being diagnosed with cancer. Perhaps the indifference that you see in your family members has a component of denial that has protected them in some way.
I’d recommend developing a strategy to communicate your feelings and concerns to your family. A a social worker, nurse, doctor, clergy member, or friend may help to facilitate a discussion with your family. Family members might benefit from meeting with you and one or more of these professionals to talk about your cancer as it presents currently and what the expectations are going forward. You can then begin to discuss with them what support you need.
The National Hospice and Palliative Care Organization offers practical information for those living with serious illness.
I hope that you have found this to be helpful, and I welcome you to talk further about your concerns with a CancerCare social worker.
My dad has terminal cancer and he is currently at home. He has no insurance, but Medicaid is pending. We're trying to get hospice or some support. What can I do?A.
It must be a very difficult time for your family and you are to be commended in seeking out resources and support services that are available to assist your family.
Hospice is paid for through the Medicare or Medicaid Hospice Benefit and by most private insurers. If a person does not have coverage through Medicare, Medicaid, or a private insurance company, hospice will work with the family to make sure needed services are provided. In order to receive hospice services, your father’s doctor will need to make a referral to a local hospice provider. You may also contact a local hospice to find out what steps you should take.
The National Hospice and Palliative Care Organization (NHPCO) offers information and resources about end-of-life and hospice through its Caring Connections website. The Caregiver Resource Directory also can provide you with extensive information. We’ve created a fact sheet, Caregiving at the End of Life, that provides guidance as you care for your father.
It’s important that you continue to follow-up with his Medicaid application, as benefits will be retroactive to the date when he applied and can be used to pay any medical bills that may be incurred during the application period. CancerCare’s fact sheets, Getting to Know Your Entitlements and Sources of Financial Assistance, may also be helpful in finding resources.
If you continue to have difficulties finding hospice services for your father, please call us at 1-800-813-4673 (HOPE) to speak with an oncology social worker.
What support services should a cancer survivor look for after finishing treatment?A.
A variety of physical and emotional responses can come up after treatment ends. Reaching out for support is a very healthy way of taking care of yourself. Engaging in certain activities can help you to regain some sense of control and be an active participant in your recovery.
Take a moment to think about the people who have been helpful to you. Your “team” includes the doctors, nurses, social workers, alternative health practitioners, other survivors and the family and friends who surround you. Defining and understanding the distinct role that each person plays is beneficial so you know where to turn when you need help. Who can answer medical questions? What programs exist to help financially? Who do you approach when you need a good listener?
Keep in mind the following services as you evaluate your current needs:
- Peer support, through support groups or survivor matching programs, allows you the opportunity to learn from others and find emotional support.
- Individual counseling provides a space to process the many complex feelings that come with cancer survivorship.
- Financial assistance programs are available to help with some medically related expenses such as co-pays for medication, as well as out of pocket costs associated with transportation.
- Alternative therapies such as Reiki, acupuncture or massage can help you alleviate side effects such as fatigue and pain. Relaxation techniques may also help you manage feelings of anxiety.
Taking inventory of available supportive services is an important first step to take. Think about what services would be a good fit for you given your current needs. If it’s not clear or you are having trouble finding local services, speak with an oncology social worker who can help guide you.
I've finished treatment and now I feel like I'm on my own. Are there things I should be doing?A.
Finishing cancer treatment often brings mixed feelings. A sense of relief and feelings of accomplishment are normal; so, too, is uncertainty about the future. Your instinct to prepare in some way for your survivorship is a good one. Here are some steps you can take to keep both your mind and your body healthy as you continue to work with your medical team.
Ask your doctor for a Treatment Summary. This should include:
- Your type(s) of cancer with the date and stage at diagnosis
- Types of treatment received (surgery, chemotherapy drugs, radiation doses and tests performed)
- Complications experienced (side effects, transfusions, hospitalizations)
- Other services used (physical therapy, acupuncture, herbal)
Discuss with your doctor what your Follow-Up Plan will be. This should include:
- Future schedule of visits (time and date)
- Who will deliver follow-up care (and where)
- Tests that will be done and why (surveillance and preventative)
- Assessment and treatment for long- or late-term effects (e.g., lymphedema, depression, pain)
- Evaluation of current health behaviors and promotion of healthy life style
There are great resources available that can help you organize all of the above information. The Lance Armstrong Foundation (LAF) has developed worksheets and a Survivorship Notebook. The National Coalition for Cancer Survivorship (NCCS) provides information about Living Beyond Cancer. And for childhood cancer survivors, the National Children’s Cancer Society offers information in managing long-term effects from treatment.
You mentioned feeling “on your own” now that your treatment is complete. This is a common feeling when treatment ends, and it’s good to know about the different types of support available to you:
- Professional support provides you with information, resources and counseling
- Peer-to-Peer support reduces your sense of isolation and helps you connect with others who share similar concerns
Finally, you might find it useful to listen to these Connect® Education Workshops:
I've been trying to get back to normal after ending treatment, but I'm having some trouble. Everyone is happy that I'm back to work, but I'm not sure I am. Why am I feeling this way and what should I do?A.
With the end of treatment often comes the expectation that it’s time for celebration, and for things to go back to how they used to be. Yet, it’s common for many people to feel lost, uncertain and confused about how to move forward. Friends and family usually mean well, but they might not be fully aware of the feelings that can surface after treatment is over.
Often times after treatment ends, people find themselves reevaluating their lives. This could mean reassessing relationships or professional goals, and discovering new ways of finding meaning and fulfillment. Moreover, you might not be fully ready to be back to work, whether emotionally or physically.
Newly diagnosed patients can be so busy learning about their diagnosis, working with their medical team, and going through treatment, that the emotional impact of the diagnosis is not fully felt until treatment has ended. Understanding what life after cancer means to you can take time. This process may involve reflecting on what you’ve been through, identifying changes you might want to make in your life and recognizing what you’ve learned about yourself.
Remember that support groups are not only for people in active treatment. You might find the feelings you’re having right now are better understood by people who’ve “been there” and are currently facing similar issues such as fear of recurrence, living with uncertainty, lingering side effects, and going back to work. You might also find individual counseling helpful.
If you have concerns about how your feelings, both emotional and physical, are affecting your daily life, speak with your doctor or a counselor for support and additional guidance.
I'm a cancer survivor and am wondering if I should seek counseling now that my treatment has ended?A.
The decision to pursue counseling is always very personal. As a post-treatment cancer survivor, you may be dealing with concerns that are different than those you had at the time of your initial diagnosis. The post-treatment phase may be a time to reevaluate purpose, direction, and priorities. We know that many cancer survivors have fears of recurrence and other anxieties that friends and loved ones may not fully understand. Speaking with a counselor can help.
CancerCare offers a number of ways to get support including counseling and support groups. A support group provides a safe place for people coping with similar issues to share and learn from each other. Many people find the opportunity to relate to others in this way enormously helpful and powerful.
You may also want to listen to our Connect Education Workshop, Managing the Stress of Survivorship.
Going forward, keep in mind that taking care of yourself emotionally is equally as important as looking after your physical needs.
What are the different types of online groups I can join?A.
Just like support groups that meet face-to-face, there are several different kinds of support groups that “meet” on the internet. Some of these groups are offered through social media platforms like Facebook, or make use of emerging technologies like virtual reality. But traditionally and most commonly, online support groups are split into the following categories:
Chat Group – In online chat, the conversation takes place in real-time, which means that when you type in a message, the other members of the group see it instantly and can respond. A chat group is usually held at a specific time and day.
Listserv – This kind of group allows its members to email each other with questions and comments. Because emails are automatically sent to everyone on the list, the number of messages you receive each day can vary and be high at times.
Message Board – CancerCare offers this type of support group, which features a bulletin board-style forum that is accessible to members, 24 hours a day, seven days a week. Participants can write comments and questions, and read and respond to one another. A message board is usually more flexible, as members can post whenever it’s most convenient for them.
Because participating in an online group is anonymous, some people find it a bit impersonal and prefer meeting face-to-face. Other people may prefer the anonymity and feel more at ease sharing with others. That being said, one unique and positive feature of online groups is that they allow people to connect with others in similar circumstances — regardless of where they live. For instance, CancerCare’s online groups are offered by specific cancer diagnoses and populations to ensure that participants are getting support from a community of peers.
Are there books written specifically for children that can help them understand and cope with a parent's cancer diagnosis?A.
After talking to your child about a cancer diagnosis, books can be a helpful follow-up to encourage learning more about cancer, exploring feelings and asking questions. It can also be a nice opportunity to spend quiet time together or give your child some autonomy to learn independently. Books are available for different age groups and developmental stages. It is important to choose books that are appropriate for your child by not only looking at the recommended age on the book, but also by looking through the book in its entirety.
The American Cancer Society offers:
- Mom and the Polka Dot Boo Boo tells a story about a young mother’s journey through breast cancer (ages 2-5)
- Our Mom Has Cancer helps children understand and cope with a parent’s cancer (ages 5-12)
- Our Mom is Getting Better and Our Dad is Getting Better helps children understand a parent’s special needs when recovering from active treatment (ages 5-12)
- Because Someone I Love Has Cancer offers activities to help children navigate a loved one’s cancer experience (ages 6-12)
KidsCope has a free comic book called Kemo Shark to help kids understand cancer and chemotherapy.
The National Cancer Institute has excellent free booklets to help teens cope with cancer:
- When Your Parent Has Cancer: A Guide for Teens
- When Your Brother or Sister Has Cancer: A Guide for Teens
If you choose to share books with your child about cancer, be sure to check in with them to see if they have questions about what they read or if they want to talk about it.
My daughter is having separation anxiety now that she knows about my cancer. She also wakes me up every night saying she is scared. She won't go to sleep without me. Any suggestions?A.
Children who have a parent with cancer often experience separation anxiety. They may be reluctant to go to school or to a friend’s house, or they may be afraid when a parent has to leave them to go to the doctor or even on an errand. Because fear is often driven by the unknown, it is important to make sure your children know about your cancer and how you will be cared for to give them as much peace of mind as possible. In addition, when you leave the house to go somewhere, tell your children where you are going and when you expect to return. Leave a contact number where they can reach you in case of emergency. By including your children in your cancer experience and daily routine, they have some control and participation, and may feel less helpless.
It’s common for children’s fears to come out at bedtime. They may feel more emotional because they are tired, or the natural separation of going into their own bedroom may trigger anxiety. If you haven’t already, set up a bedtime routine for your daughter that is comforting, such as listening to music, reading a story, or talking. Spending peaceful time with her before she falls asleep will help her relax and feel safe. It is also important for children developmentally to learn to self-soothe. Teach her techniques she can try should she wake up during the night, such as reading to herself or listening to a recorded story in your voice. Reinforce that you are safe in bed nearby. Establishing routines and communicating with her about your cancer should help alleviate some of her fears.
For more information about communicating with children about a cancer diagnosis, read CancerCare’s Helping Children When a Family Member Has Cancer. The American Cancer Society also has a helpful guide, Helping Children When A Family Member Has Cancer.
You might also want to seek counseling for your daughter so that she can express and work through her fears. Our staff of professional oncology social workers are knowledgeable in children’s issues related to a parent’s diagnosis, sibling or other loved one. To speak with a social worker, call us at 1-800-813-HOPE (4673) or email email@example.com.
My 7-year-old daughter is sure she did something to cause my cancer. What can I say to her to convince her otherwise?A.
It’s normal and expected for children to fear they have somehow caused a parent’s cancer. When children don’t understand something they sometimes use “magical thinking” —the belief that one can bring about an event by thinking about it or wishing for it. By continuing to think she caused your cancer, your daughter is likely telling you she loves you, is afraid, and has no other explanation other than she must have done something to cause it.
You have already taken the first step to help your daughter, which is to take her concerns seriously. The next step is to plan a talk with her addressing her feelings and providing accurate information. Simply telling your daughter that she didn’t cause your cancer is not enough—you need to give her an explanation that she can understand.
Pick a quiet time when you and your daughter will not be rushed or interrupted, and sit next to her or hold her hand so she feels safe. It is important to praise your daughter for talking to you about her thoughts and feelings and encourage her to continue. You can also let her know that many children worry that they caused their parent’s cancer, but it’s not actually possible. Our booklet, Helping Children When a Family Member Has Cancer, offers suggestions on what you might say to your child including:
“Mommy (or daddy) is sick with an illness called cancer. The cancer happened on its own—nobody did anything to make it happen. I have very good doctors, and I am going to do everything possible to get better.”
Your daughter may accept this explanation, or may want more concrete information. Depending on her level of maturity and interest, you may use books or the internet to help her learn more about your cancer. Make sure to preview any materials or websites before sharing them with her and allow her to continue to share her feelings.
My teenage son has had body-image issues since having cancer. His treatments caused him to gain weight and surgeries left him with scars. How can I help him deal with this?A.
Body changes may make your teen feel uncomfortable about how they look. These feelings may be strong enough to make them want to avoid their friends, school, public places or having their picture taken. Adolescence is a time where teens engage in social comparisons, often comparing themselves to their peers and friends. It is important to validate your son’s concerns regarding his body image. Self-esteem is very fragile and is often impacted by not only how we view ourselves, but how others view us as well.
Keep an open line of communication with your son about this topic. Explain to him why his treatment is so important even though it has caused him to gain weight. Try to help him understand why his body is changing so that he can understand these changes are not permanent. You may also want to encourage him to engage in some types of physical activity when he is feeling up to it (activities approved by his oncologist or physical therapist). Also, you may want to consult with a nutritionist to create helpful and healthy eating plans while on treatment.
It is important for your son to understand the reason behind his surgeries and scarring. Many times, a conversation before surgery can help teens prepare for body changes so that they are not such a shock. However, after the surgery site has healed, you can experiment with different types of make-up and concealers (there are special ones for scars). Also, different clothing styles may be able to cover the areas that your son is not comfortable exposing.
You can support your son during this time by doing some of the following:
- Providing an outlet to express his feelings (art, music, writing, etc.)
- Listening if and when he wants to talk about body image changes
- Letting him know that you understand what he is feeling and that it is okay to feel the way that he does
Creating a safe space for him to share what he is going through is important. If necessary, reach out to your son’s social worker through the hospital or a child life specialist. It is possible that outside support is necessary in order to make your son feel heard.
Teens Living with Cancer has information to help teens learn about cancer, its treatment and how to cope. This site’s Dealing with It section talks about body issues, school, family and friends, and it helps teens connect with other teens who have cancer.
If you need additional support, feel free to reach out to CancerCare’s Hopeline (800-813-4673). We can provide psychosocial support as well as local referrals as needed.
I'm looking for support for my teenage son to help him deal with his sister's cancer. Can you recommend any specific places?A.
A child with cancer can change family dynamics and these changes are often difficult for siblings. It can be challenging for parents to focus on the needs and concerns of their other children, which can lead to siblings feeling “invisible” or alone. Siblings often experience many emotions in this situation such as: fear and anxiety, anger, jealousy and resentment, loneliness, guilt, sadness and grief.
It is important to talk with your other children about cancer while also giving them a safe space to share their feelings and worries. Getting help is important as well; you do not have to learn to cope alone.
In linking your son to support systems it will be important to:
- Reach out to a social worker where your daughter is receiving treatment; they might be able to refer you to a local support group for siblings
- Check out SuperSibs, an organization designed specifically to give support to siblings of cancer patients. Their website has resources and tips as well as camps and events that help connect other siblings going through a similar experience
- Look into an online support group. CancerCare offers an online support group for teens who have a loved one with cancer. This support group is run by a licensed oncology social worker and is designed to create an environment where teens can share and connect with one another
If additional support is needed, you can reach out to an oncology social worker through CancerCare’s Hopeline (800-813-HOPE) for additional information.
I have received several different treatment recommendations from doctors, and I have to decide what type of treatment to have. This overwhelms me. How can I make the right choice?A.
It’s normal to feel scared about making such an important decision, and it is a decision you need to make in partnership with your healthcare team. Women today are offered many more choices than in the past, and are often asked to make the final decision about their care. You need to gather information about your different treatment options so that you feel confident discussing your concerns with your doctors.
After talking with your doctors, keep in mind that you have obtained an expert medical opinion, and you need to understand your doctor’s perspective by asking why he or she has made that recommendation. It is important that you not compare yourself to other women in a similar situation. Even women who have the same diagnosis can have a different treatment plan—neither is right or wrong. Rather, it is individualized to you and your body. However, you can review with your doctor the information you learn from other women who have your type of cancer to better understand your own treatment plan.
In making a decision about what treatment to choose, make sure you identify what is most important to you. For example, if you are concerned about chemotherapy, what are the reasons for your concern? What questions do you need answered? Often, people fear that if they choose one type of treatment over another, they will always worry that they did not choose correctly. Instead, ask yourself questions such as: “What am I being told, and why? What do I think is the best choice for me at this time?” The most important thing is that you make the decision that you are most comfortable with.
To learn more about your treatment options, contact The National Cancer Institute’s Cancer Information Service (1-800-4-CANCER), which provides the latest cancer treatment information as well as a list of comprehensive cancer centers.
The Lance Armstrong Foundation also offers helpful information.
CancerCare’s professional oncology social workers assist women with cancer by providing emotional and practical support, free of charge. Call 1-800-813-HOPE (4673) or email firstname.lastname@example.org.
I'm starting chemotherapy soon. Should I avoid having sex?A.
There are ways to continue to be sexually active while in treatment. Often cancer-related fatigue, changes in your blood chemistry, and/or changes in your hormones can be obstacles. Please be patient with yourself if these treatment side effects prevent you from having sex while receiving treatment. Here are some recommendations for both men and women in treatment who want to retain physical intimacy in their relationships:
- Ask your doctor or nurse when it is safe for you to be sexually active. This requires that your blood chemistry be at values that ensure you have enough red, white, and platelet blood cells.
- Always use a barrier when having sex. This most often is a condom but can also be a dental dam that covers the vaginal wall. Barriers also protect both genders from any source of infection and women from pregnancy.
- Talk with your partner about your desire to continue having sex, and ask for his or her help to find ways to remain physically intimate.
- Consider couple’s counseling to help you both learn to cope together.
- Consider different types of sexual expression other than those that requires penetration. Sensual massage that focuses on the whole body as well as the genitals is a safe alternative.
- If you are a woman having trouble lubricating, ask your oncologist or gynecologist to suggest different lubricants and moisturizers that do not contain any of the forms of estrogen.
- If you are a man having trouble with erections, ask your oncologist or urologist to prescribe an appropriate erectile dysfunction medication.
- Remain appropriately physically active — being physically intimate requires energy. In addition, activity can help you manage fatigue. Ask you doctor what kinds of exercise is best for you.
- Speak with a CancerCare social worker to find information and availability of support groups or couples and/or individual counseling.
I am a spiritual person and believe that prayer works. My 94-year-old aunt now has bladder cancer. How can I use the power of prayer to help her and my cousins?A.
Prayer can be a wonderful way to be helpful to others. It is not even necessary to believe in God or a Higher Power to pray. Buddhists, for instance, do not believe in God according to the Western understanding of a divine being, but they pray nevertheless. You can think of prayer in its simplest form as sending out positive energy into the universe. Where this energy goes or what it does is more a matter of mystery than of science and is a topic of much debate. However, prayer considered as a form of complementary therapy certainly does not hurt and may be beneficial.
Praying for someone can be a way to help at times when it may appear that there is little you can do. You can pray for the person with cancer, for those who are caregivers (such as your cousins), and even for the doctors who are providing the treatment. Prayer can be very powerful on many levels — emotional, physical, psychological and spiritual — both for the person who is praying and the person for whom the prayers are offered.
Prayer can be done individually or in groups. Via the telephone or internet, requests for prayer can be sent to many people. Receiving prayers, whether on a local, national or even global scale, can be a great source of comfort and support.
Here are a few suggestions regarding the use of prayer:
- Be easy on yourself; there is no “right” way to pray. Prayer is a very personal experience, so be honest and let it be your own.
- You might not feel like praying and that’s okay. There might be other times you will feel like doing so.
- Prayer can also be symbolic – examples may include going to a sacred place, touching a memorable object, or looking at a photograph.
My cancer has just come back, and I feel really let down by my faith. Is this normal, and is there something that could help me through this crisis?A.
The Chinese word for “crisis,” wēijī is composed of two characters: wēi, which means “danger,” and jī, which means “turning point.”
A spiritual crisis can certainly be a “turning point” in your life – one in which you reevaluate what is important in life, reexamine your faith, and maybe even find a new faith or spiritual tradition that makes more sense to you based on your experience. It can present “danger” in the sense that sometimes, if you reject your faith during a critical time, you may lose the opportunity to be comforted by your beliefs.
There can be times when it seems that God, or the higher power you believe in, is not present in the midst of our suffering. One option is to believe that. Another option is to look deeper and try to find evidence of this higher power’s presence, for instance in the caring words of those around us. You might see such signs of compassion and empathy – one person showing interest or concern for another. But perhaps these are the means by which divine or universal love is made manifest.
Many faith traditions have written materials to address the issue of a spiritual crisis. You may also find it more helpful to speak in person with a clergy person of your faith, or contact a local interfaith center if you prefer to speak with someone outside of your own tradition, about your feelings.
I'm currently in treatment and having a hard time leaving the house, even for doctor's appointments or going to church. I've heard that some members of my church have been able to receive assistance from the parish. Do you know what type of help is available?A.
Being connected with a faith-based community not only can provide a source of spiritual comfort and support, it can also be of help with practical assistance. Many faiths put a high priority on service to others, especially people who are dealing with illness. Depending on its size and how many staff members it has, a congregation is a rich resource that can be mobilized with just a phone call to the person or committee in charge of outreach to people in need.
The type of help a congregation offers could include home visits by clergy or another member, meal deliveries to patients and their families who may be too exhausted to cook, or someone to accompany you to your appointments. Sometimes a congregation member will volunteer to “stand in” for your own caregiver for a few hours at a time so that your caregiver can go out to do the shopping or run other errands. A congregation might also provide transportation for getting to and from medical appointments or religious services. Some congregations may also have discretionary funds that can help out their members who are facing financial emergencies.
Most important is to be clear and explicit about what your most pressing needs are and what kind of help you are seeking. Asking for help is never easy, but faith communities are designed to respond in a supportive way to those who are in difficult situations.
You might also find assistance by searching a database maintained by a volunteer interfaith initiative called Faith in Action, which helps connect people with specific needs to faith communities that might offer appropriate assistance.
I was raised in a non-religious household and was never exposed to any spiritual or religious practices or ideas. How can spirituality help me cope with my cancer?A.
Spirituality can be defined in multiple ways, but primarily it has to do with the idea of connectedness. The word “spirit” comes from the Latin root spiritus, which literally means “breath.” Connecting with the spiritual part of ourselves means getting in touch with that which gives us life, not only in the biological sense, but also in terms of what gives our life meaning and purpose.
One approach to spirituality is found in the Buddhist concept of mindfulness. Practicing mindfulness means being present in the moment and fully aware of what is going on, both inside and outside of yourself. Walking through a beautiful garden, listening to music, or even taking a shower or eating a meal can be considered spiritual if the element of mindfulness is present. Being in a state of mindfulness can provide a sense of calm and enhance the quality of daily life.
You might also consider reading some of the sacred texts, such as the Bible, the Koran, or Bhagavata. The spiritual traditions of both East and West have explored the question of why people suffer – often the “why” question of cancer. Faith-based texts, which were written and refined over centuries, can provide insights and new perspectives on suffering. They can also be a source of comfort and guidance.
Another benefit of spirituality comes from having a community of people who share similar beliefs. In difficult times, this community can serve as a resource to fall back on. Members of a spiritual community can reach out to the individual or family through phone calls, visits, prayer lists, and other ways.
For more information read CancerCare’s fact sheet, Strengthening the Spirit.
One of the toughest times I have is when I go to bed at night. After I turn off the lights and am in the dark, my thoughts go immediately to my cancer and possibly dying from it and all the things I should do in preparation. Any suggestions?A.
Anxiety is very common among cancer patients. For some it occurs when they wake up, and for others, as they try to go to sleep. You mention three concerns which trigger anxiety as you’re trying to fall asleep. The first is turning off the lights, the second is the fear of dying, and the third is wanting to have your affairs in order.
The dark can be an especially scary place for people facing a life threatening illness. Absence of light is a metaphor of the darkness of unknowing. Try changing your bedtime routine – relax into your pillow with the light on. Like a child who sees monsters in the dark, turning on the light, even dimly, can provide comfort and a sense of control, allowing you to relax and fall asleep.
Your second concern, fear of dying, triggers a “fight or flight” reflex, hardwired into all of us for survival. Using mindful meditation, focus on your breath while non-judgmentally looking at your thoughts when your mind wanders, especially thoughts of worry. When you feel anxious, gently bring your focus back to your breath. Breath, specifically oxygen, is life, which fuels us, and aims to keep us in balance. Anxiety makes us take short breaths depriving our body and mind of oxygen and making us more anxious. When anxiety is high, take a deep breath, hold it for a comfortable amount of time, then release it, and repeat. You can do this for a few minutes or until you fall gently to sleep. You might also try listening to a pre-recorded guided imagery exercise, if you have difficulty meditating on your own.
Finally, thinking about unfinished business, especially if there is a perceived timeline, often makes people anxious. Putting one’s affairs in order does not mean giving up on life, it simply means taking care of, and continuing to invest in our lives. With the worry of cancer it can be hard to focus on individual tasks, thereby increasing one’s anxiety. Try writing down the things you need to take care of, and then prioritize them. Use creative visualization, by imagining yourself doing and finishing each task, and enjoying a sense of accomplishment as each task is completed. These visualizations can serve as a first step and increasing the likelihood of completion, which in turn can free you of the worry that is keeping you awake at bedtime.
To learn more about reducing anxiety, please read our fact sheet, Relaxation Techniques and Mind/Body Practices.
Can you suggest some resources that address the effects of mind/body exercises on your immune system?A.
There are numerous ongoing studies in the field of mind/body practices indicating that reducing stress can positively affect one’s immune system. One theory is that the mind and body communicate through vibration. Simply put, we are all vibrating — from external sources such as the sun, television, satellite and cell phone signals, and from internal sources such as breathing, talking, hearing, digesting, and thinking. Dr. Candace B. Pert, a pharmacologist and neuroscientist and author of Molecules of Emotion: The Science Behind Mind-Body Medicine (Simon & Schuster) examines how the immune, central nervous and endocrine systems are communicating (or vibrating) back and forth all the time. Her book also addresses such questions as: Where do our thoughts come from? How do we store and retain them? How do we transmit these thoughts throughout our bodies to maintain the conscious and unconscious actions necessary to regulate our bodies?
Another excellent guide is The Healing Power of Sound: Recovery from Life-Threatening Illness Using Sound, Voice, and Music (Shambhala Publications) by Dr. Mitchell L. Gaynor, an oncologist who explores the science of vibration and offers practical exercises for harnessing sound as a relaxation technique.
Vibration exercises can sometimes be more effective for some people than meditation or imagery in offering moments of peace and calm during the stress of illness. One example of a vibration exercise is drumming. The repetitive beating of a drum with a mallet becomes an active mantra and an expression of emotion. Over the course of 10 or 20 minutes, the vibration emitted by the beating begins to break down the tensions of the body that can cause stress. There are many sounds and instruments that people can use, but percussion instruments tend to have a more vibrational resonance that can be felt physically. Drumming, alone or in a group, can be especially helpful for creating a sense of relaxation.
In pursuing mind/body practices, it’s important for each individual to choose a technique that will be helpful to them.
My treatments for cancer aren't always easy. More and more, I am thinking negative thoughts, which only increases my anxiety. What can I do to calm my mind and help make my treatment sessions go more smoothly?A.
We’ve all heard the saying, “We are what we eat.” No one disputes that since it’s apparent the food we put into our mouths replenishes cells and becomes our physical bodies. Less commonly heard is, “We are what we think.” This is because it is much less apparent what direct impact our thoughts play in our well being. Unlike food, which can be quantified and controlled, our thoughts are affected by external sources often outside our control including people, places and things. Now, the growing field of psychoneuroimmunology (PNI) shows that the mind and body are constantly communicating, back and forth.
If negative thoughts come up for you in managing your cancer, guided imagery exercises can help you counter them with positive thoughts, so the body can be more relaxed. One imagery exercise is called Creative Visualization, which is used in sports psychology, business and other areas where people confront challenges. It’s a simple technique that uses your imagination to envision an event as you would like it to happen.
Before receiving a chemotherapy treatment, you might take time to quietly sit and visualize how you would ideally like treatment to go. It helps to think about details such as what clothing you’re wearing, how the weather feels, or where you’ll be sitting or lying when you get your treatment.
During your treatment, you can continue to visualize the chemotherapy (or radiation or surgery) as it travels through your body and “confronts” the cancer cells. Use your imagination: employ super heroes (yourself or others), magic wands, or loved ones providing comfort, hope and strength to defeat the cancer. This technique can ease the mind’s tendency to worry and help you focus on “rallying” healthy cells and the immune system to defeat disease.
If you have difficulty coming up with your own Creative Visualization exercise, it might be easier to listen to a pre-recorded Creative Visualization exercise. You can find a large number of CDs and audiobooks on this subject by doing a search (using keywords “guided imagery” or “creative visualization”) at Amazon.com. Also, a good book on the topic is Creative Visualization: Use the Power of Your Imagination to Create What You Want in Your Life, by Shakti Gawain (New World Library Publishers).
I was told that if I did not have a positive attitude my treatment wouldn't be as effective, or worse, it wouldn't work. Sorry, I just don't feel positive about this whole cancer experience! What can I do?A.
It is natural that anyone who hears the words “you have cancer” will experience negative feelings. Allowing those feelings to come out is part of the healing process; to deny them can cause even more stress.
A member of a young patient group once said, “I’m a realistic optimist. I’ll do everything I can to beat cancer, but I also want to learn to live with the knowledge that I don’t have full control.” To try and be only positive during a difficult time can be a form of denial, and can hold back valid feelings that need to be expressed.
A simple mind/body technique called Mindfulness is meditation practice which uses the breath as a point of focus for the mind, and can help you acknowledge (in a non-judgmental way) the full range of feelings, both physical and emotional, that can arise. When we have a negative feeling, physical or emotional, there is the tendency to attach blame to it, thereby increasing the suffering. Mindfulness simply recognizes and observes the feeling, letting it happen without being pulled into it. Through Mindfulness, you can embrace that staying positive in the face of cancer includes recognizing and validating all the feelings you are experiencing, negative ones included.
The benefit of mindfulness meditation is that it can be done sitting quietly at home, at work or during daily activities.
Two books on Mindfulness Meditation you may find helpful are Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn (Hyperion), and Get Out Of Your Mind And Into Your Life: The New Acceptance and Commitment Therapy, by Steven C. Hayes (New Harbinger Publications).
Since I've been diagnosed, I've been anxious and sometimes feel overwhelmed by my thoughts, which I can't seem to "turn off." Are there any ways I can help myself to feel more calm?A.
Anxiety is a natural emotional experience for eveyone. When someone has to cope with a cancer diagnosis, anxiety (or worry) can increase, intruding on an individual’s ability to regain a sense of calm, clear his or her thoughts and feel more control over the issue at hand. Chronic anxiety can lead to fatigue and depression over time, so it is important to find techniques that can offer relief from the stress of cancer, even if just for short periods of time.
When confronted with crisis, our bodies trigger a “fight or flight” response. Part of this physical response is rapid, shallow breathing, which increases blood flow through the heart and puts extra oxygen into our bodies. A person under chronic stress will continue to take shorter, more shallow breaths, which will in increase stress and create a continual state of anxiety.
Here’s a simple breathing exercise that can help calm you:
- Sitting down, place one hand on your chest and the other over your navel.
- Take three breaths and observe your breathing. For most people, the chest area tends to rise more than the abdomen.
- Now, take in a deep breath and extend your abdomen. Picture your lungs as long, narrow balloons, filling up from the end to the front; and from the bottom to the top.
- Hold the breath and silently count to five; then, exhale loudly.
- Do this for three breaths and then sit quietly for a moment. If you feel lightheaded, hold the next breath for a shorter time. Most people find there is a calming feeling that follows.
The beauty of this exercise is you can do it anywhere, anytime. The goal is to reduce stress by returning yourself to a natural state of breathing.
You can find more relaxation techniques in CancerCare’s fact sheet, Relaxation Techniques and Mind/Body Practices: How They Can Help You Cope With Cancer.
I've been diagnosed with advanced cancer. I have five children and feel they don’t want me around for Christmas, because it makes them sad, and they don’t have the time for both me and their own families. I can’t be alone. I don’t know what to do to or what to say to them.A.
I am very sorry to hear that you are facing these challenges this holiday season. While you feel that your children are not wanting to have you with them, you don’t say whether you have spoken with them about your concerns. It may be that they are unsure of how you are feeling or what your expectations might be concerning Christmas. If you are in need of any special assistance or equipment to facilitate spending time with them, they may not feel prepared to manage those needs. The key may be to open up a discussion with them to talk about your preferences for being with family that day and to address the practical considerations that would make it possible.
As difficult as it is to cope with cancer during the holidays, it is also possible to be joyful. For many, the idea that you can feel both sad and joyful is an unusual concept. While your family may experience feelings of sadness associated with the many issues related to your cancer, there can also be joyfulness when spending time together with those who mean so much and creating memories of a special day. The challenge can be in maintaining an awareness of the pleasures that are available in the midst of a very difficult time.
Many people face challenges like yours during the holiday season. It might be helpful for you to speak with a CancerCare social worker about your unique circumstances, so please call us at 1-800-813-HOPE (4673). We’ve also compiled suggestions that might be helpful in our fact sheet, Coping With Cancer During the Holidays.
Three weeks before the holidays, my father was diagnosed with advanced cancer. Hospice care has started but I find it isn’t enough and other family members who live in town really don’t offer help. Some days seem too overwhelming - how do I focus on everyday activities?A.
Depending on your particular family and faith traditions, there can be a lot of expectations at this time of year, many of them focused around finding joy in the season. When illness or grief interrupts those expectations, it can be difficult to manage.
Be kind to yourself during this time, and consider what is truly important to you now. That can require you to adjust your expectations about everything from shopping to housecleaning. Make a list of those things that you truly enjoy and decide which of those traditions you would like to retain. Give yourself permission to “pass“ on those traditions that generate stress or involve a good amount of effort
This may also be a time that you can ask others to provide additional support. This can include a conversation with the hospice social worker concerning what other services may be available. You might use the services of a hospice volunteer or have the ability to engage additional home care supports on your own.
While it would be ideal for family and friends to volunteer their help, it may be necessary to ask them. Consider whether there are specific tasks that you can ask others to perform which can provide you a break from the day-to-day demands of care giving. Is there someone who can stay for a few hours, offer to go to the market, or bring your father to a scheduled appointment? Many times family and friends would like to help but are at a loss as to how to be helpful without being disruptive to routines.
An additional resource you might find helpful is our Connect Education Workshop, Coping with a Loved One’s Cancer During the Holidays.
My 42-year-old brother passed away this year and I was his caregiver. I am devastated and do not know how to cope this holiday season.A.
The holidays are a time for giving, so please give yourself the gift of acceptance — your grief is part of your healing process. It’s natural that remembering your brother at this time brings sadness and pain. Express your feelings and try not to isolate yourself from those who care about you.
Remembering your brother on special days is way to honor him. He can be there in spirit through a symbolic ritual such as lighting a candle at a family dinner or planting a tree on New Year’s Day. Do things that have a personal meaning to you and will foster positive memories of him.
Your feelings are a normal response to loss and you need to give yourself time to adjust to living in this world without him. Do what you feel up to doing during the holidays, but take care of yourself and let others know that you have limited energy, both emotionally and physically.
To learn more about grief, what to expect, and how to cope, please read:
CancerCare’s fact sheet, Living With Grief: How Can You Help Yourself
The National Cancer Institute’s Grief, Bereavement, and Coping With Loss
Finally, How To Go On Living When Some One you Love Dies, is an excellent book that is written by one of the foremost experts on grief, Therese A. Rando (Bantam Publishers).
I have been receiving chemotherapy treatments for the past six months and my memory is not as good as it used to be. Is this because of the chemo? What should I do?A.
During chemotherapy treatments, you may notice memory or thinking changes, sometimes referred to as chemobrain. Chemobrain affects your cognitive or thinking abilities including: memory, attention, concentration, word finding or retrieval, multi-tasking, learning, and sense of direction. Researchers are not certain of the exact causes of these difficulties, but they are currently studying this problem in order to find ways to both treat and prevent it.
There are a number of treatable conditions that can affect memory, such as low blood counts, hormonal changes, stress, fatigue, sleep disturbances, depression, and anxiety. Some of your medications could also be affecting your ability to think clearly.
It is important for you to talk with your doctor if you are having trouble with your memory. Your health care team can be very helpful to you in figuring out ways to manage your memory and thinking changes related to chemotherapy. Bring a list of your questions to your doctor, take notes, and ask permission to record your visit. If possible, bring someone with you. Get a second opinion if your doctor doesn’t take your concerns seriously.
Memory tools can help to boost your memory. Write things down in a planner, pick one spot to keep your keys and wallet, place reminders around your home and work space of tasks you need to do, and recognize the importance of nutrition, exercise and sleep.
CancerCare offers the following fact sheets addressing chemobrain:
- Cognitive Problems After Chemotherapy
- Doctor, Can We Talk About Chemobrain?
- Combating Chemobrain: Keeping Your Memory Sharp
- Improving Your Concentration: Three Key Steps
Remember that you are not alone. Work with your health care team to address your memory changes, join a support group, learn more about chemobrain through our educational workshop, Chemobrain: The Impact of Cancer Treatments on Memory, Thinking and Attention, and most importantly be kind to yourself.
My dad is elderly and is scheduled to start treatment for cancer. We are concerned about his ability to tolerate treatment side effects given his age.A.
The single greatest risk factor for cancer is aging. Our population is living longer and cancer is a disease that occurs in older adults. There is no clear data, however, showing that certain cancer treatments, when appropriate, should not be offered on the basis of age. The only exception is when there are pre-existing health problems.
Chronic health problems unrelated to cancer — such as hypertension, diabetes, heart disease or arthritis — do need to be considered with regard to cancer treatment and its side effects. For an older adult, it is important that the choice of treatment plan takes into account his or her overall health status, including:
- any medications being taken and their possible interaction with cancer treatments
- the person’s mobility, balance, and memory
- any nutritional needs or restrictions
- social supports, including who will be there to help with daily concerns like grocery shopping, cooking, and providing transportation to medical appointments.
It is appropriate for you and your dad to expect to control treatment side effects. Before your father starts treatment, make sure his doctor knows about any medications he is currently taking for other health problems, and ask about what treatment side effects he should expect. In many cancer centers, there are health care specialists that will work with your doctor to help manage treatment side effects. Talk with your dad’s doctor about symptoms you and he are worried about. Don’t be afraid, embarrassed, or hesitate to ask questions, voice your opinion, and seek the care your dad needs and deserves.
For more information, read these CancerCare publications:
- Caregiving for Your Loved One with Cancer
- Understanding and Managing Chemotherapy Side Effects
- Controlling Cancer Pain: What You Need to Know to Get Relief
- Your Health Care Team: Your Doctor is Only The Beginning
Our professional oncology social workers can also help people with cancer and their loved ones with the practical and emotional concerns arising from a cancer diagnosis. Contact us 1-800-813-HOPE (4673).
I have a full-time job. How will side effects from my chemotherapy affect my ability to work?A.
Many people are able to continue working during their treatments and being proactive can make all the difference. The keys are good communication with your health care team, knowing up front what the expected side effects will be, and developing a plan with your doctor.
Schedule an appointment with your doctor to talk about your job and its activities. Make sure that your doctor understands the importance of your job as a source of health insurance, income and purpose, and that your employment be considered in any medical decisions. Get details about your treatment side effects and develop a plan that addresses each one. Explore with your doctor options that will make it easier to continue working, such as scheduling treatments on Friday afternoons to minimize their impact on work.
Once you have spoken with your doctor and know better what to expect, you may want to talk to your supervisor or human resource department about your need for flex time or time off. If you work full time, learn about workplace legal protections and accommodations. Know the provisions of the Americans with Disabilities Act and Family and Medical Leave Act. You may also contact the Equal Employment Opportunity Commission. All are helpful resources for understanding your legal rights in the workplace when you have cancer.
CancerCare offers these additional resources:
I'm worried about how the side effects from my treatment will interfere with the holidays. Any suggestions?A.
People view the holidays as a time to celebrate and connect with family and friends. However, the season can be stressful if you are living with cancer and trying to manage treatment side effects such as fatigue, weight loss or gain, nausea or pain.
Fortunately, doctors have many ways to reduce and even prevent side effects. At CancerCare, we often use the word “coping” to describe how people deal with cancer. People sometimes mistakenly think that coping means just living with a problem, whether you like it or not. But coping actually means managing a problem and finding a new way to take control of it.
You can maximize your enjoyment of the holidays by letting your health care team know now about your holiday plans and ask for their help in taking control of treatment side effects. Make an appointment with your doctor to discuss your concerns and ask for guidance regarding holiday meals, travel, and conserving your energy, as well as rescheduling your treatments, if possible, so that any resulting side effects will not occur on during the holidays.
CancerCare offers publications offering additional information so that you can better manage your treatment side effects and enjoy the holiday season:
- Coping with Cancer During the Holidays
- Understanding and Managing Chemotherapy Side Effects
- Coping with Cancer: Tools to Help You Live
You can find additional information through the National Cancer Institute.
CancerCare’s social workers are here to help you with emotional support and practical help. Call 800-813-HOPE (4673) or email email@example.com.
My aunt is on morphine and acetaminophen for advanced cancer. What else can we do to ease her pain?A.
If you feel that your aunt’s pain is not being adequately managed by medication she is currently taking, it is important that you consult with her medical team.
Excellent pain management services and a wide array of pain medications are available. It may be that all that’s needed is for her doctor to change the dosage or frequency of her medication.
However, your aunt’s medical team must continually be informed of her pain level. Don’t assume that they are aware of the level of pain she is experiencing. Doctors often have to rely on their patients and caregivers to tell them whether or not the medications are working for them.
If your aunt’s medical team is not asking about her pain or pain management, you should speak up and raise your concerns with them. If they feel that there is nothing they can do to ease her pain further, consider ask them for a referral to a pain clinic or pain specialist.
For more pain management information, please read our publications:
- Controlling Cancer Pain: What You Need to Know to Get Relief
- Opening the Door to Effective Pain Management
Additionally, you will find detailed information about pain management in The Caregiver Resource Directory.
My mother has been struggling with pain since she was diagnosed with cancer. What can she do?A.
Both you and your mother should speak to her medical care team about the pain she is experiencing and ways to manage it. Her doctor needs to know about her level of pain and must continue to reassess it with each visit. If you have already spoken to the medical team, but feel that the pain has not been adequately managed, ask your doctor for a referral to a pain clinic, where you can consult with a pain specialist whose sole concern is controlling and managing the pain associated with cancer. Remember, pain management is an important part of cancer treatment, so speak up!
CancerCare publications that address pain include:
- Controlling Cancer Pain: What You Need to Know to Get Relief
- Opening the Door to Effective Pain Management
Other resources include:
I'm receiving chemotherapy and have been gaining weight. Is that normal?A.
Many people undergoing chemotherapy treatments experience changes in their body weight—either weight loss or weight gain. If you notice that you are gaining weight, it is important to tell your health care team. Your doctor will need to evaluate the cause of this change, since there are many factors that may be contributing to it. Once your doctor diagnoses the causes, then you, your doctor, and health care team can develop a plan to treat your weight gain.
Eating is such an important part of our social activities, including getting together with friends and family, celebrating birthdays, anniversaries, holidays and other special occasions. Your doctor may recommend that you consult with a dietitian who can suggest eating tips to help you find a balance between enjoying your favorite foods at special occasions, while watching what you eat. In addition, your doctor may recommend that you speak with a doctor of rehabilitation medicine or a physical therapist so that you can start an exercise program to help with weight management.
The most important thing to remember is that a change in weight is often due to cancer treatments and is not your fault. Because weight gain affects how we look and how our clothes fit, many people decide to join a support group or seek individual counseling to find new ways to cope with their changed body image.
We offer additional information about coping with cancer:
- Your Health Care Team: Your Doctor is Only the Beginning
- Relaxation Techniques and Mind/Body Practices: How They Can Help You Cope with Cancer
- Coping with Cancer During the Holidays
- Strengthening the Spirit
- Coping with Cancer: Tools to Help You Live
To speak with a social worker who can provide support and also find local counseling or support groups, call 1-800-813-HOPE (4673) or email firstname.lastname@example.org.
I'm worried about taking pain medications. Could I become addicted?A.
Fear of becoming addicted is common among people who are prescribed medications for cancer pain. This fear can keep some patients from talking with their doctor about the pain they are in. It can also keep them from following their doctor’s orders about when and how often to take their medicines. Some people may even skip some of their doses because they are afraid of “getting hooked.”
It is true that you may experience physical symptoms of withdrawal when your pain medication is stopped. Some common symptoms might include feelings of irritability and agitation. This is called physical dependence, and it is a normal response to taking a pain medication, not a sign of an addiction. Addiction is a psychological, or emotional, dependence on a drug.
Sometimes our bodies can become used to the medicines that we are taking. This is described as building up a “tolerance” to your medication. It means that the pain medications that used to work may no longer help relieve your pain.
Building a tolerance to your pain medications is usually not considered a problem. Your physician can simply change the dosage of your medication or prescribe a new medication for you. Again, it is important that you keep your doctor informed as to what works and what doesn’t in easing your pain. Your physician will work very closely with you when prescribing your schedule of pain medication.
It’s important to talk with your doctor about any concerns or fears you may have. This will help ensure that pain medications are used safely and effectively.
My mother is undergoing chemotherapy treatments and her appetite is poor. She has a doctor's appointment next week. I plan to go with her but don't know what to say to her doctor.A.
It is wonderful that you are helping care for your mother and your important role is known as a “caregiver.” Going with your mother to her appointment can be very helpful since good communication with her doctor will improve the quality of care she receives. Your mother may feel overwhelmed and needs your help to sort through the doctor’s instructions on managing her poor appetite.
Before this visit with the doctor, write down any questions the two of you would like to ask. Make your questions as specific as possible and ask your most important questions first. Bring a notebook or tape recorder so you can keep track of the doctor’s answers and refer to them later.
Questions to ask her doctor:
- What could be causing my mother’s poor appetite?
- Are there any ways to improve my mother’s appetite?
- Can you arrange for her to meet with a dietitian to help us plan her meals and snacks?
- Is there any medication that would help to improve her appetite?
You may also want to learn about organizations that help with care at home. Ask your mother’s doctor or hospital social worker about local home health agencies.
CancerCare publications that can help include:
- Tips for Managing Nausea and Increasing Appetite During Cancer Treatment
- Communicating With Your Health Care Team
- Caregiving for Your Loved One With Cancer
The National Cancer Institute offers:
I have been treated by my oncologist for cancer for over 2 years. It currently has spread and I've been referred to hospice care. I thought there would be more treatments available to me. My oncologist was so positive at the beginning and now I feel that she is avoiding me and I'm very hurt. Should I confront her?A.
Yes, you should talk to your doctor about your feelings and concerns. Don’t be afraid to be honest with your doctor. Many doctors have difficulty dealing with the emotional side of cancer and they may not know how to deal with their own feelings as well as those of their patients. Decisions around treatment should be discussed with the patient and ending treatment is a decision you should make with your doctor. What are her reasons? Is the decision to end treatment due to concerns about the benefits of treatment verses the risks and discomfort of continued treatment? You have the right to explore every possible medical treatment available. Are there clinical trials that may be available to you at this time? You may also consider seeking a second opinion. These are all questions that can be part of the discussion you have with your doctor.
The Cancer Information Service (1-800-4-CANCER), through the National Cancer Institute may be a helpful resource for you. They can provide the latest cancer treatment information as well as a list of comprehensive cancer centers and clinical trials.
It can also be helpful for you to speak to someone about what you are feeling. You’ve developed a relationship with this doctor over the last two years and this is an understandably difficult and painful loss. It is important to maintain hope and our social workers can help you to redefine hope even when cancer treatment may no longer be an option.
I'm starting to have second thoughts about my oncologist. She started off having more time to answer my questions, but over time, I feel like I can barely get a phone call returned. I don't want to be a pushy patient, but I also am becoming more and more frustrated. What should I do?A.
Your frustration is understandable. Many doctors struggle with managing time due to the increased demands on their time from patients and other responsibilities. However, you should be able to feel that you are receiving the best medical care possible, including answers to your questions. Remember, the doctor is only one member of your health care team. If you are not able to communicate directly to him or her, try talking to the nurse, nurse practitioner, or social worker associated with your oncologist’s practice. At the very least, a member of the team can approach the doctor with your questions and relay answers to you directly. Prioritize and state your questions concisely. Ask how they prefer you to communicate your questions and concerns—for instance, some doctors may prefer email over a phone call.
Questions will come up outside of your scheduled appointments and it’s a good idea to prioritize them. If the problem is urgent, call your doctor immediately. If it isn’t, keep an ongoing list of questions for your next appointment. Make your questions clear, and make every word count.
Communication is a two-way street. It’s important to be direct about the issues you have with your doctor. If you are still not satisfied with your doctor (or medical team), you have the right to change. You can ask family members or friends for recommendations and explore the doctor’s communication style specifically. Remember to be consumer wise—your good health may depend on it.
If you are still feeling frustrated, CancerCare has experienced social workers who can help you more effectively communicate with your doctor. Call us at 1-800-8130 HOPE (4673) or email email@example.com.
How do I talk to my doctor about the pain I am experiencing?A.
Pain is a message your body sends saying that it needs help. Pain medications can offer you relief. But first, you’ll need to tell your doctor how you feel. The more accurately you can describe your pain to your doctor, the better your doctor will be able to help you. Rating your pain on a scale from zero (no pain) to 10 (worst pain) can be an effective way of measuring and describing your pain to your doctor.
To make sure you receive effective pain management:
- Tell your doctor immediately about any pain you are experiencing. NEVER allow your pain to build up over time. Pain needs to be monitored and assessed at each doctor visit.
- Write down any questions you may have about your pain and how to manage it BEFORE your visit to your doctor. And, be sure to write down the answers your doctor gives you.
- Bring someone with you to your appointment. Having another person there who can give you emotional support, ask questions, and remember information can help you better address and manage your pain.
- Be specific and describe your pain in detail to your doctor. Don’t assume your doctor knows how you feel. Tell your doctor what your pain feels like, when it is at its worst, and when it appears to ease up, if it does.
- Keep a pain diary or journal. Record such things as when and where the pain occurs, what makes the pain worse, what provides relief, and how the pain affects your quality of life.
Remember, you are the expert on your pain, and your doctor is there to help you. Effective pain management is about teamwork. Get involved and be an active participant in your care.
I just started chemotherapy. I am not eating as much as before I started treatment. I don't have the energy to prepare my meals and sometimes feel nauseated. What should I do?A.
Nausea and fatigue are common side effects in cancer treatment but can be well managed with the help of your health care team and medications. Daily chores and tasks can be especially difficult when you are tired. This is the time to ask others to help you prepare your food so that you can maintain good eating habits during your treatments. Perhaps you don’t want to “bother” your family or friends or ask them to do simple tasks. Most of the time, family and friends are looking for a way to contribute to your care, even if they can’t be there all the time. Try having one family member or friend to be your primary caregiver, and have that person organize help from the others. Together, they can work as a team to do your food shopping, bring you meals and help you around the house. Giving each one a specific task allows each one to feel that he or she is helping you.
You can also get help with meals and house chores from your hospital, non-profit agencies and private organizations. Sometimes this help is covered by insurance, and sometimes you may need financial assistance to get the help you need.
CancerCare resources that will provide you with useful information include:
- Tips for Managing Nausea and Increasing Appetite During Cancer Treatment
- Coping with Nausea and Vomiting from Chemotherapy
- Coping with Cancer: Tools to Help You Live
- Coping with Nausea and Vomiting from Chemotherapy (podcast)
Eating Hints for Cancer Patients: Before, During, and After Treatment from The National Cancer Institute is another great resource.
CancerCare’s professional oncology social workers assist people living with cancer, family members and caregivers with the practical and emotional concerns arising from a cancer diagnosis. Call us at 1-800-813-HOPE (4673) or email firstname.lastname@example.org.
My mother was recently diagnosed with cancer and is seeing a local oncologist. I'm wondering if I should research oncologists or hospitals that specialize in the treatment of her type of cancer. I don't think she wants to change, but I want to make sure we're doing everything possible. Should I proceed with my research?A.
Caregivers struggle with how they can help their family member while at the same time not take over making medical and life decisions. One way you can feel more helpful is to find out information about the diagnosis, treatment and possible clinical trials. You may also suggest getting a second opinion from a specialist. It is important, however, to listen to your mother and not make the decisions for her. Ultimately, she has to feel comfortable and trust her doctor. Being able to communicate with the doctor and the medical team will help improve the quality of the care your mother receives.
Talk to your mother about your concerns. If she is finding it difficult to talk to her doctor, help her formulate questions and offer to go to her treatments and doctor visits. Often times, patients have a difficult time taking in all that is said during an appointment, so you can be helpful by taking notes. This will not only provide support to your mother but may also allow you to feel more in control.
For more tips read our booklet, Communicating With Your Health Care Team.
The Lance Armstrong Foundation also offers information about improving communication.
You might also want to join a support group to address some of your concerns and hear how others manage communication issues. CancerCare offers telephone, online and face-to-face support groups for caregivers. Caring for yourself is extremely important when coping with a loved one’s cancer. To learn more about how to help your loved one with medical as well as emotional concerns, read our publications, Caregiving for Your Loved One with Cancer and Caring Advice for Caregivers: How Can You Help Yourself?
I've just been diagnosed with cancer. How can I get information to help me make treatment decisions?A.
There is a great deal of information about cancer and cancer treatments, especially online. The challenges are how to find and evaluate information to make sure it is reliable, up-to-date, trustworthy and appropriate to your diagnosis and situation. For cancer information, I recommend contacting The National Cancer Institute’s Cancer Information Service (CIS) to speak with an information specialist through a LiveHelp option or by calling 1-800-4-CANCER.
To help you evaluate online information, keep these questions in mind:
- What is the purpose of the website? Is it educational or commercial—that is, is the site trying to sell you a product or service?
- What is the source of the information?
- Is the information evidence-based—that is, based on scientific research?
- Does the website provide contact information for individuals who are responsible for its content?
- Are the links relevant and appropriate for the site?
Once you have information, the next challenge is how to make sense of it. Ultimately, your doctor and health care team are best able to help you interpret information. Identify someone on the health care team you are comfortable talking to. Then:
- Write down your questions before your doctor visit
- Ask questions if you don’t understand what the doctor says
- Take notes and if possible, bring someone with you who can assist you
Interpreting medical tests requires that you consult with your health care team. Make sure you ask for copies of lab tests, biopsy results, X-Rays, ultrasounds, CAT and PET scans, or MRIs. Schedule time with your doctor and health care team to review all test results, and their implications for your treatment and care.
CancerCare has a number of publications that offer practical tips:
Where can I find a simple explanation of medical terms?A.
After being diagnosed with cancer, you enter a world that is unfamiliar to you—with its own language, including medical terms and jargon. You often see not only one doctor, but a team of health care professionals, who speak to you using different medical terms and phrases.
These two online resources will help you find simple explanations for complex medical terms and procedures:
Knowledge is a powerful tool to cope with cancer. In addition to using the glossaries, make sure to ask your medical oncologist and health care team questions. Whenever your doctor uses a term that you don’t understand, be sure to ask what the word means. It’s okay to say to your doctor, “I don’t know what that word means. Could you please explain to me?” Asking questions regularly will help you better understand medical terms and their implications for your cancer and its treatments.
Contact your health care team when you have a question. They are the best source of consistent information for you. Most importantly, do not wait until your next scheduled appointment to ask a question. Call your health care team when you have a question so that you get the answers you need.
CancerCare’s fact sheet, Your Health Care Team: Your Doctor is Only The Beginning, describes the health care professionals on your team and how they can help you.
What is "compassionate use"?A.
Being part of a clinical trial is the most common way that patients receive investigational drugs (i.e. drugs that have not yet been “FDA-approved”). The term “compassionate use” or “compassionate exemption” means that a patient is allowed to receive a drug even though he/she does not meet the eligibility criteria of a clinical trial in which a drug is being studied.
The decision to provide a drug in this manner is made on a case-by-case basis and there must be a reasonable expectation the drug will prolong life or improve a person’s quality of life. In addition, the sponsor of the clinical trial must agree to make the drug available and, as noted in a National Cancer Institute fact sheet, Access to Investigational Drugs, the drug being studied must also meet the following criteria:
- There must be substantial clinical evidence that the drug may benefit persons with particular type of cancer.
- The drug must be able to be given safely outside a clinical trial.
- The drug must be in sufficient supply for ongoing and planned clinical trials.
Read Understanding the Approval Process for New Cancer Treatments to learn more about the drug approval process, special needs programs such as “compassionate use” exemptions, as well as something known as “off-label” drug use, which can be a confusing issue for some patients.
Should you have any further questions, there are three ways you can contact the National Cancer Institute’s Cancer Information Service (CIS):
Are there clinical trials for cancer treatments other than chemotherapy?A.
Often times, people think clinical trials are limited to exploring ways of improving existing standard treatments such as chemotherapy. It is important to remember that there are other types of clinical trials, each designed to answer scientific questions in order to find better ways to prevent, screen for, diagnose and manage a disease.
Prevention trials mostly involve people who have not had a history of cancer, although some are conducted with people who have had cancer and want to prevent a return of their disease or reduce the chance of developing a new type of cancer. Participants in a prevention trial may take a particular medication, vitamin or other supplement in order to see if they are effective preventive agents.
Screening trials include people who do not have any symptoms of cancer. These studies aim to determine whether finding cancer before it causes symptoms will decrease one’s chance of dying from the disease. Imaging studies are another significant area of research and help determine the value of imaging procedures for detecting, diagnosing, guiding, or monitoring the treatment of disease.
Supportive care trials include areas of research that are investigating new ways to improve the comfort and quality-of-life of cancer patients and cancer survivors. These studies look at ways to help people who may be experiencing side effects such as nausea, depression, pain or fatigue caused by their disease or its treatment.
Genetics trials focus on how one’s genetic makeup affects detection, diagnosis, or response to cancer treatment. Other genetics research-referred to as “population” or “family-based” genetic research will look at tissue or blood samples, generally from families or large groups of people, to find genetic changes that are associated with cancer. The goal of these studies is to help understand the role of genes in the development of cancer. Learn more about genetics.
Clinical trials of all types are the only method for advancing the practice of medicine, for increasing patients' options, for improving patient outcomes, for better addressing symptom management, as well as finding better and more targeted methods for preventing, detecting and/or treating cancer.
For more information on clinical trials, or to have a tailored clinical trial search done, please contact the NCI’s Cancer Information Service (CIS) for personal, confidential help at 1-800-4-CANCER (1-800-422-6237).
I am currently receiving treatment for my second recurrence of cancer. I have no family or friends close by, and my husband works so if I become very sick I will be home alone most of the time. How will hospice be able to help us? I know that they can't be here 24/7. Any idea what my options will be?A.
The focus of hospice is on the care and comfort of the individual and his or her family, not cure. Usually hospice care is provided in the patient’s home, but hospice services are also provided in hospitals, nursing homes and hospice centers. The hospice team can include: the patient’s attending physician or a hospice doctor, social workers, nurses, home health aides, medical specialists, counselors, clergy, and volunteers. The goals of hospice care include managing any pain or symptoms that arise and providing emotional, spiritual and practical support to the patient and family.
When hospice is needed, you should be able to get up to 20 hours of home health aide services through hospice care (depending on the state where you live, assistance can also be called CNA hours). A common dilemma is figuring out how to supplement the services hospice offers if additional hours are needed. While there is not an easy answer, I have a few suggestions:
- Ask if the hospice has volunteers who can visit a few times a week as they often have volunteer programs.
- If you are connected with a faith community, ask if they have staff or volunteers from the congregation who could help.
- Check with the home care agency that your hospice uses to see what additional hours might cost. For additional information, see Hiring In-Home Help.
- Inquire through the hospice agency for recommendations of private-hire caregivers who have cared for other hospice patients and are experienced with providing this type of supplemental care.
- Remember that if your needs increase, hospice can arrange short-term in-patient stays until your needs decrease and you can return home.
- I know you mentioned not having family close by, but for others who might, family members could explore Family Medical Leave Act (FMLA) options.
For additional information about hospice care, visit the National Hospice and Palliative Care Organization’s website, Caring Connections.
My father's oncologist has made a referral for him to see a pain specialist. Is this palliative care? He seems resistant - how do convince him that it's a good idea? And is palliative care covered by insurance?A.
A distinction needs to be made between a referral to palliative care and a referral to a pain specialist. Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the pain, symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses, social workers and other specialists who work together with a patient’s own doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
Palliative care physicians are specially trained in complex pain management resulting from serious illnesses such as cancer, so they are experts in administering managing opioids and other potent pain medications. Pain management specialists usually treat pain that does not result from complex, serious illness. They are often anesthesiologists if they are physicians, or nurse anesthetists if they are nurses.
Palliative care specialists bill insurance just like oncologists, cardiologists or any other specialist. Your father might have received a referral to either a pain specialist or a palliative care team. Either way, it is important that he follows up with the referral for his own physical and emotional well-being. Pain associated with cancer is complicated because the causes of pain can be variable and change from day to day.
For more information, please read our publications:
What is palliative care?A.
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing relief from the symptoms, pain and stress of a serious illness, including cancer. The goal is to improve quality of life for both the patient and loved ones.
Palliative care is provided by a team of doctors, nurses, social workers and other specialists (e.g., massage therapists, pharmacists, nutritionists, chaplains) who work together with your other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and you can have it along with curative treatment.
Palliative care controls symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. It also helps you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments. And it helps you have more control over your care by improving communication so that you can better understand your choices for treatment.
The palliative care team spends as much time as necessary with you and your loved ones and provides practical, emotional and spiritual support. They help you and your family every step of the way, not only by controlling your symptoms, but also by helping you to understand your treatment options and goals.
Most insurance plans, including Medicare and Medicaid, cover palliative care. If costs concern you, a social worker or financial consultant from the palliative care team can help you.
Learn more about palliative care through getpalliativecare.org.
I am going through treatment and need help covering the costs of practical things, like nutritional drinks and medical supplies. Are there resources available?A.
The cost of nutritional supplements as well as other supplies can be an added and unforeseen expense for many cancer patients.
For help with nutritional supplements, first check your insurance policy to learn whether these supplies are covered and under what circumstances. For example, Medicaid, Medicare and some private insurance will pay for nutritional support for patients that need feeding tubes for more than three months.
Other possible sources of support are patient assistance programs offered by the product manufacturers. You can also call the Partnership for Prescription Assistance at 1-888-4PPA-NOW to find out about any other nutritional assistance programs.
Caregivers Marketplace is a consumer cash-back program that offers savings on name-brand health care products. Consumers can request cash back with each purchase of the eligible products.
You can also contact a social worker through your hospital to find out what local agencies might provide discounts or other cost savings on medical supplies.
My son owes one hospital over $100,000 for surgeries, chemotherapy and radiation treatments. He has recently been approved for Medicare but it will be impossible for him to pay the remaining costs, after Medicare pays, for any future treatment. Is there any legal help for him?A.
The consequences of medical debt are staggering and unfortunately all too common. Medical debt is a major burden and a source of continuing stress for many cancer patients, especially those who are younger, have lower incomes, and lack insurance, according to a recent report by the Kaiser Family Foundation.
If he hasn’t already, your son should approach the medical centers where he has been treated to find out whether they will either lower his bill or work with him to address this sizeable debt. Some facilities provide funding to offset any care that isn’t covered by his insurance, though he will be expected to provide proof of his financial situation. Your son should also explore supplemental coverage plans such as Medicaid that could help with the amounts not covered by Medicare.
The Patient Advocate Foundation’s case managers provide guidance and support and can intervene on your son’s behalf regarding his medical debt. They also maintain a network of volunteer attorneys.
Lawhelp.org provides referrals for affordable and/or free legal assistance programs in one’s area and advice about bankruptcy protection and other financial issues.
How do I find information about a particular doctor or hospital? How do locate a specialist?A.
There are many reliable sources of information for finding medical professionals or cancer treatment facilities. Professional organizations or associations are a good place to start.
The following resources can help you find information about specific oncologists, specialists, and surgeons:
- The American Society of Clinical Oncology’s website, Cancer.Net, offers a Find an Oncologist database that allows you to search by many different criteria, including area of specialty, board certification, and location.
- The American Board of Medical Specialties (ABMS) offers information about physicians who have additional specialty training and have met certain educational requirements.
- The American College of Surgeons provides information about how to find a qualified surgeon and the different types of surgical specialists.
For information about hospitals, cancer treatment facilities, and surgical centers contact:
- The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) produces quality and safety reports on institutions that can be accessed through a database via their website.
- The Accreditation Association for Ambulatory Health Care provides certification to organizations that have met their high standards.
- The National Cancer Institute (NCI) can direct you to NCI-approved cancer treatment facilities.
- MedlinePlus has links to directories to help you find health professionals, services, and facilities.
You can also ask people you trust or other patients about their own experiences with particular physicians or treatment centers. It is important that you find a doctor with whom you feel comfortable since you and your health care team will be working very closely together.
A number of employees in our workplace have cancer. As the personnel director, I would like to organize educational programs to help all our employees learn more about cancer. How do I do this?A.
Many human resource departments are proactive in helping their employees cope with cancer in the workplace. They demonstrate compassion by developing educational programs to help employees with their concerns.
Companies address cancer in the workplace with education and information. Some employers offer annual company-wide health fairs. Smaller companies may not be able to offer a large health fair for their employees, but they might be able to work with their benefits provider to host smaller events and workshops during the year.
Another way to provide low-cost employee education is to partner with community outreach programs, cancer centers, and nonprofit organizations that can provide educational materials and seminars.
Examples of workshop topics include:
- Cancer treatment updates
- Early detection of cancer
- Communicating with your doctor
- Coping with a co-worker’s cancer
- Review of employer sponsored health plans
CancerCare offers many resources that can assist human resource departments to develop educational programs and services for their employees, including:
- A comprehensive overview of all the services that we offer.
- Fact sheets on prevention and early detection to distribute at workplace seminars and health fairs.
- A staff of professional oncology social workers who are available to assist you and your employees with cancer-related concerns.
Contact us at 1-800-813-HOPE (4673) to learn more about how we can help.
My co-worker told me she has cancer. I don't know what to talk about or what to say to her.A.
Many people are not sure what to say when someone they know is diagnosed with cancer. Our work relationships are an integral part of the fabric of our lives. Many of us spend more waking hours at work than at home. Many families are scattered geographically and so for some people, the workplace is “family.” The extent of your involvement depends upon the nature of your relationship prior to the cancer diagnosis. Here are some suggestions that may help you:
- Ask your co-worker if she wants to talk about her cancer diagnosis and treatment
- Be willing to listen
- Ask how you can help and be specific with ideas
- Tell her that you care about how she is feeling
- Keep your conversations confidential
- Try to maintain a normal office relationship with her
- Send a card or pay a visit if she is in the hospital
- Offer to help her find resources
We also have a number of publications that offer additional tips:
- Caregiving for Your Loved One With Cancer
- What Can I Say to a Newly Diagnosed Loved One
- Caring Advice for Caregivers
You may also want to speak with a CancerCare oncology social worker to discuss your concerns.
I am an employer and one of my employees has just been diagnosed with cancer. I want to be helpful but am not sure what I should do.A.
The most important things you can do are to listen to the employee who discloses his or her cancer diagnosis and to offer workplace support. It is critical to let the employee who is living with cancer know about the ability of your workplace to make accommodations for his or her needs. The key message you as an employer can offer an employee is your willingness to work with them, if at all possible, to help them continue working as long as their doctor supports their decision to work and they are able to do the job.
The following are some tips that many employers find useful:
- Know the provisions of the Americans with Disabilities Act and Family and Medical Leave Act and make that information available to supervisors and employees.
- Create a workplace culture that allows flextime or other accommodations for cancer patients who can and wants to continue working.
- Educate managers to deal sensitively with employees who have cancer so that they do not make assumptions about their ability to perform job duties.
- Teach managers to maintain a dialogue with employees being treated for cancer so that adjustments in workload or work schedules can be anticipated.
- Allow employees to decide if or how they would like coworkers to be informed of their illness and honor requests for confidentiality.
- Work closely with your human resource department regarding employee benefits and resources.
You may also find CancerCare publications, covering a broad range of cancer-related topics, helpful. Our professional oncology social workers can also assist employees with cancer, their coworkers, and managers.
I was just diagnosed with cancer and plan to continue working. Do I have to tell my employer that I have cancer?A.
Many people continue to work productively while being treated for cancer. Continuing to work can be vital to your sense of well being and is a source of income and, often, health insurance. Each workplace has its own unique culture. Whether or not to tell your employer about your cancer is both a personal and practical decision.
Many myths about cancer exist in our society, including in the workplace. For instance, employers and coworkers may assume that a person with cancer or their caregivers are not able to perform job responsibilities as well as before cancer. Sometimes, these misconceptions can lead to subtle or blatant discrimination.
It is important for you to become familiar with the laws protecting you before you decide whether or not to disclose your cancer diagnosis.
The Americans with Disability Act (ADA) requires that organizations with 15 or more employees comply with ADA guidelines. These are the criteria to take advantage of ADA protection: meet the ADA definition of “disabled person,” qualify for the job and be able to perform its essential functions, and not pose a risk to your own or others' health and safety. The ADA recommends that any accommodation that you need does not cause “undue hardship” to your employer.
Flexible work hours to meet treatment schedules and doctors appointments is the most frequent workplace accommodation required by people living with cancer. If you require flextime, it is important to disclose your cancer diagnosis to your supervisor or human resources department to be protected under the ADA. If no reason is given for frequent requests of flextime, you could risk jeopardizing your job security. For more information, contact the ADA at 1-800-514-0301.
The Family and Medical Leave Act (FMLA) enables the person with cancer and family members to take unpaid leave of up to 12 weeks within one calendar year. The FMLA applies to organizations with 50 or more employees. The employee must have worked with his or her employer for at least one year, and employers must continue health benefits during the leave. Leave does not have to be taken all at once, but can be taken in blocks of time.
The Equal Employment Opportunity Commission (EEOC) is a federal agency that enforces the provisions of the ADA and FMLA and assists citizens who feel they have been discriminated against in the workplace. If you feel you are being treated unfairly, contact the EEOC at 1-800-669-4000.
CancerCare’s oncology social workers provide practical resources and help with your workplace concerns. Call 1-800-813-HOPE (4673) or email email@example.com.
How do I figure out which Medicare plan is right for me? I don't know if I should get a Medicare Advantage plan or a Medigap plan, or if I should just keep my original Medicare and do neither.A.
When you become eligible for Medicare you receive Part A, which covers certain hospitalization costs. If you want coverage for outpatient services, you should choose Part B as well. Even with Medicare A and B there are still “gaps” in coverage: for example, there is a 20% co-insurance fee for Part B services, and neither A nor B offer drug coverage. Most people choose to supplement their coverage with a retiree plan if their former employer offers it, or a “Medigap” plan, which plugs most of the holes in coverage (except medications). The rest, roughly 18%, choose a Medicare private health plan, called a Medicare Advantage Plan. These plans must offer at least the same benefits as original Medicare but have different rules, costs and coverage restrictions.
Medicare Advantage plans can be useful for those looking for all-in-one medical and drug coverage. However, Medicare Advantage HMOs restrict which doctors and hospitals you can use. An article in Kiplingers magazine sums up the differences well: “Medicare Advantage plans may charge lower premiums than you’d pay for Medicare plus a Medigap policy and Part D prescription-drug coverage. But you could end up paying higher out-of-pocket costs throughout the year. Some Medicare Advantage plans charge higher co-payments for big-ticket items such as hospitalization, or for critical services such as chemotherapy. Or they might not pay for the first 20 days in a skilled-nursing facility (which traditional Medicare covers). In addition, a plan may provide limited coverage if you travel out of state.”
Please note: A study of cancer patients by an affiliate of the University of Pittsburgh Cancer Institute suggests that members of Medicare Advantage HMO plans are opting out of clinical trials because these policies generally require that the patient pay 20% of the costs associated with a trial. In contrast, Medigap plans generally cover those costs.
I have insurance, but I still have bills that are stressing me out. I thought I'd be covered, but I don't know how I'm going to pay the part I'm being told I owe.A.
If you are insured and struggling with outstanding medical bills, consider the following options:
- Read your insurance policy and understand the terms of your contract. If you have questions, ask your insurance company, insurance broker, or the human resources staff at your employer to explain it to you. Your insurer may have denied a claim even though you are entitled to coverage. The Kaiser Family Foundation has an excellent guide on how to dispute claims with your insurer.
- Double check all bills and EOBs (explanation of benefits). You’d be surprised how often billing mistakes are made. Look for incorrect dates of service (you shouldn’t be billed for the room on the day you were discharged) and duplicate fees for tests and procedures.
- Ask the hospital or doctor to consider the insurance payment as “payment in full.” Many people don’t think to do this, and it is often more successful than expected. Some hospitals have funds to offset medical services that aren’t fully covered by insurance.
- Negotiate the outstanding balance by asking for a discount. According to a Wall Street Journal survey, 70% of adults who talked with a hospital say they were successful in negotiating a lower price for their medical bills; 61% were successful with their doctor. You will likely get a greater discount (sometimes as high as 50%) if you pay the outstanding balance in a lump sum. You can also set up a payment plan.
- The Volunteer Lawyers Project of the Boston Bar Association offers good advice on medical debt. Although some of the information is specific to Massachusetts, sections like “deciphering a medical bill” and “negotiating tips” are useful wherever you live. Healthinsuranceinfo.net also has a concise guide on managing medical debt.
- Explore the resources for co-payment and other medical cost assistance.
Remember to reach out for help—medical debt understandably causes emotional stress and it’s important to get as much support as you can. Speaking with a counselor can help you manage some of your stress and come up with a plan so that you feel more in control.
I've been having trouble paying my co-pays. I am self employed and with the downturn in the economy my business is way down. Where can I go to find some help?A.
Direct financial assistance for co-pays is limited, but it does exist. The following non-profit organizations provide help for expenses such as drug co-payments, deductibles, and other medical costs. Each program has its own eligibility requirements, so please contact them to learn more.
- CancerCare Co-Payment Assistance Foundation
- Patient Access Network Foundation
- Healthwell Foundation
- Patient Advocate Foundation’s Co-Pay Relief Program
- Patient Services Incorporated
- National Organization for Rare Disorders
- Leukemia and Lymphoma Society
In addition, the Partnership for Prescription Assistance has a comprehensive database of pharmaceutical companies that offer their medications at little or no cost to those who qualify.
I think I may have cancer but I don't have any insurance and I'm not sure I can afford it. What can I do?A.
I understand your concern about the cost, but if you think you have cancer, you can’t afford not to visit the doctor. Cancer responds to treatment better when it’s caught early, and if it turns out that you don’t have it, you will have peace of mind.
There are 5 main ways to get health insurance:
Your, or your spouse’s, employer or union. If you or your spouse has a job that offers health insurance, ask if you’re eligible to receive it or buy into it. If you had insurance but lost your job within the last 60 days, ask if you’re eligible for COBRA. COBRA is a law that lets you keep your insurance for 18 months, sometimes longer. You pay the full cost.
Your school. If you are currently a full-time or part-time student, check with your college or university to see if you can get coverage through them.
Purchase it on your own. You can buy insurance either directly through an insurance company, or through your state’s Marketplace/Exchange. If you buy it directly through an insurance company, you will not be eligible for discounts based on your income. If you buy it through your state’s Marketplace/Exchange, your income will be taken into account, and you may receive an immediate subsidy, which will lower the cost of your premiums, and possibly your deductibles and co-pays as well. To find your state’s Marketplace, go to www.healthcare.gov. Please note: whether you buy it directly from an insurance company or through the Marketplace, you can only buy insurance during Open Enrollment. Open Enrollment occurs once a year, generally between November and January. There are a few exceptions to this rule – if you lose your job-based coverage mid year, get married, have a baby, move to another county or state, or become eligible for Medicaid, you are eligible for a “special enrollment period”. For more information on special enrollment periods, visit www.healthcare.gov.
Medicaid. Medicaid is a state-administered health insurance program that provides free or low-cost coverage to millions of Americans. In the 30 states that have chosen to “expand” Medicaid, it covers all children and adults below 138% of the Federal Poverty Level, which for 1 person in 2016 is approx.. $16,240. In the remaining 20 states, it only covers low-income families with children, pregnant women, the blind, and the disabled. To see if your state has expanded Medicaid, and to apply, visit www.healthcare.gov.
Medicare. If you are 65 or over, or have been deemed disabled by the Social Security Administration for 2 years, you may be eligible for Medicare. Contact www.medicare.gov for more information.
If you are unable to afford insurance and are ineligible for Medicaid or Medicare, ask about charity care and sliding scale programs (fees based on your income) at hospitals and clinics. Some hospitals are required to see patients who are uninsured. Contact your local department of public health, social services, or business office of your hospital of choice for more information.
Finally, if you are concerned about either breast or cervical cancer, the National Breast and Cervical Cancer Early Detection Program provides low-income, uninsured women access to screening and diagnostic services to detect breast and cervical cancers. Women who are subsequently diagnosed with cancer may be immediately eligible for limited Medicaid.
I receive Social Security Disability. Can I work at minimum wage part-time (20 hours a week maximum) without losing my Medicare and disability payments?A.
Probably. However, you need to be aware of Social Security’s special rules called work incentives that help you keep your disability and Medicare benefits while you test your ability to work. For example, there is a trial work period. During the trial work period, you can receive full benefits regardless of how much you earn. You just have to report your work activity and continue to have a disabling impairment.
The trial work period continues until you have completed 9 trial work months within a 60-month period. We consider your work to be services if you earn more than $720 a month in 2011. After the trial work period ends, your cash benefits will stop during months your earnings are at a level we consider substantial, currently $1,000 in 2011. There are additional protections for continuing Medicare coverage. Most persons with disabilities who work will continue to receive at least 93 consecutive months of Hospital (Part A); Supplemental Medical Insurance (Part B), if enrolled; and Prescription Drug coverage (Part D), if enrolled, after the 9-month Trial Work Period.
For more information about work incentives, we recommend that you read, Working While Disabled—How We Can Help.
I am the caregiver for my elderly father who has cancer. My father’s cancer has spread to his bones and he's having pain. What can I do to help relieve his pain?A.
Your father is fortunate to have a caring family caregiver who wants to help him get relief from his pain. Unrelieved pain may cause sadness, decreased mobility, and irritability. Treating cancer pain is essential to your father’s well being and I offer these suggestions:
- Ask your father if he is willing to discuss his discomfort and pain with his health care team and if he wishes you to accompany him on his next appointment.
- With your father’s approval, schedule an appointment as soon as possible.
- Patients are often asked to describe their pain using a Pain Scale of 1-10 with 10 being the greatest amount of pain. His health care team will ask a number of questions to help identify the type of pain, examine the area where the pain is most bothersome, and order imaging tests to further determine the source of the pain.
- Pain is effectively treated by over the counter as well as prescription medications. Most cancer hospitals have multi-disciplinary Pain Teams to recommend the best approaches to manage pain.
- There are a number of prescription medications; some are delivered intravenously, to treat bone metastases. These treatments can also reduce pain.
CancerCare Connect booklets and fact sheets are also very informative:
- Caring for Your Bones When You Have Cancer
- Controlling Cancer Pain: What You Need to Know to Get Relief
The National Cancer Institute’s Cancer Information Service is a resource for additional information. Call 1-800-4-CANCER or visit www.cancer.gov.
I'm wondering if there are any good resources out there that would help me know what to expect as I'm taking care of my mom who has advanced cancer.A.
Caring for a family member or loved one with cancer can be a full-time job. There are lots of unknowns and by asking for help, you have taken the first step in helping your mother. Luckily, there are a variety of resources available to assist you with caring for your mother. I encourage you to start by taking care of yourself so that you can be as prepared as possible to assist your mother. You will find suggestions in our publications, “Caring Advice for Caregivers: How Can You Help Yourself?” and Caregiving for Your Loved One With Cancer.
Our free Connect® Education Workshops provide helpful, practical information:
- Survivors Too: Family, Friends, and Loved Ones – Managing the Fatigue of Caregiving
- For Caregivers: Coping with Holidays, Special Occasions, and Birthdays, Throughout the Year
Family Caregiver Alliance is an organization that focuses solely on the needs of caregivers. They offer many resources on their website including the section, Caregiving Info & Advice, various publications and fact sheets, and educational webinars such as Caregiving 101: Exploring the Complexities of Family Caregivingiving.
The Caregiver Resource Directory includes chapters about symptom management at home and the goals of care in progressive illness.
Another helpful resource is the American Society of Clinical Oncology’s publication, Advanced Cancer Care Planning: What Patients and Families Need to Know About Their Choices When Facing a Serious Illness, which may be downloaded from their website or ordered free of charge.
Caregivers have their own unique set of needs, and although you do not have cancer, you are living with the disease every day. You may find speaking with a counselor or joining a support group for caregivers helpful. CancerCare offers counseling as well as online and telephone support groups specifically for caregivers. You may also want to listen to our Connect Education Workshop, Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally.
My husband was diagnosed with cancer in 2009. He finished treatment and is cancer free, but he continues to act like he still has cancer and is dwelling on it instead of getting on with his life. Is this normal?A.
When a person with cancer has completed treatment and shifts from life as a patient to life as a survivor, the transition period can bring up mixed feelings and often takes time to process. Each person is unique, and it is common to have an adjustment period. Life after cancer is often referred to as the “new normal,” which can be challenging for caregivers.
As you know, cancer affects not only the person with cancer, but also caregivers who must adapt after their loved ones complete treatment. CancerCare offers helpful tools that address survivorship issues, including our publication, After Treatment Ends: Tools for the Adult Cancer Survivor.
CancerCare’s Connect Education Workshops, which are accessible both by phone and online, offer a wealth of information about coping with survivorship issues. Past workshops are available through our website and you and your husband may find the following workshops helpful:
- Survivors Too: Family, Friends and Loved Ones – Managing the Fatigue of Caregiving
- Living With, Through and Beyond Cancer, Part I: Managing the Stress of Survivorship
- Support for the Caregiver: Balancing Your Needs and Your Role as a Caregiver
- My Treatment is Over: Why Do I Feel So Alone and Sad?
Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally is an workshop that might also find helpful.
My 5-year-old nephew has lost an eye due to retinoblastoma. He has started asking questions we do not know how to answer (e.g., What does cancer look like? Was I born with it?). How do we answer these questions and ease his anxieties?A.
When talking to children about a cancer diagnosis, it’s important to provide honest, age-appropriate answers. For instance, when the child asks if they were born with cancer, you can tell them that the cancer happened on its own—nobody did anything to make it happen. There may also be questions that you may not know the answers to and it’s okay to simply say “I don’t know,” which is an honest answer.
The reason why we stress being honest when talking with a child about cancer is that by doing so, you’re letting the child know that you can be trusted. For more information about talking to children and helping them cope with cancer please read our booklet, Helping Children When a Family Member Has Cancer.
Children may not have a clear understanding of what cancer is, which is why we recommend using arts, crafts, toys, and games to assist in talking about cancer. For example, you can take a small piece of clay and place it on a doll to show where the cancer is located. One might also draw a picture of a person to show the child where the cancer is located on the drawing.
It can be helpful to read books which are specifically written to help children understand cancer and its treatment. Kemo Shark is a downloadable comic book that is designed to help kids understand cancer and chemotherapy.
At times, counseling may be useful to assist children in working through the feelings behind their questions. If you think this might be helpful for your nephew, CancerCare’s professional oncology social workers can help you find local children’s counseling services. Please call us at 1-800-813-HOPE (4673).
My husband has advanced cancer, and he has severe pain in his lower back and legs. What does that mean?A.
Pain is a message your body sends saying that it needs help. Let me say that although your husband may be experiencing increased pain, this does not necessarily indicate that his cancer is becoming worse. It is very important to communicate with his medical team so they can explore this further and take appropriate action to address his pain. There are various pain medications that can offer relief. Pain management works best and is most effective when there is a team effort. The more accurately you both can describe the pain to his doctor, the better his doctor will be able to help him. Rating pain on a scale from zero (no pain) to 10 (worst pain) can be an effective way of measuring and communicating levels of pain.
To make sure he receives effective pain management:
- Tell his doctor immediately about any pain he is experiencing. NEVER allow pain to build up over time. Pain needs to be monitored and assessed at each doctor visit.
- Write down any questions you may have about his pain and how to manage it BEFORE you visit his doctor. And, be sure to write down the answers his doctor gives.
- Accompany him to his appointment. Having another person there who can give him emotional support, ask questions, and remember information can help him better address and manage his pain.
- Be specific and describe his pain in detail. Don’t assume his doctor knows how he feels. Make sure to describe in detail what his pain feels like, when it is at its worst, and when it appears to ease up, if it does.
- Keep a pain diary or journal. Record such things as when and where the pain occurs, what makes the pain worse, what provides relief, and how the pain affects his quality of life.
Remember, pain is what the person says it is. Your husband is the expert of his own pain and his medical team is there to work with you both.
You’ll find additional information in our publications:
My pain seems to be increasing. How do I tell my doctor without sounding like a "seeker"?A.
Fear of becoming addicted or becoming a “seeker” is common among people who are prescribed medications for cancer pain. Unfortunately, this fear can keep some patients from talking with their doctor about the pain they are experiencing. It can also prevent them from following their doctor’s orders about when and how often to take their medications. Some people may even skip some of their doses because they are afraid of “getting hooked.” However, if you feel that your pain is increasing, it is important that you consult with your medical team. Keep in mind that pain is what the person says it is. You are the expert when it comes to your own pain. A simple change in the dosage or frequency of your medication may be all that is necessary to ease your pain.
Although a possibility exists that you may become physically dependent on your medication, which is a normal response to taking a pain medication over a period of time, this nonetheless is not a sign of an addiction. Sometimes our bodies can become used to the medicines that we are taking. This is described as building up a “tolerance” to medications. It means that the pain medications that used to work may no longer be working to help relieve your pain. It’s important to talk with your doctor about any concerns or fears you may have surrounding this. Don’t assume that your doctor is aware of the level of pain you are experiencing. Doctors have to rely on their patients to inform them whether or not the medications are working. Keeping your doctor informed will also help ensure that your pain medications are being used safely and effectively. If you feel that your doctor is not addressing your pain to your satisfaction, you might consider asking him/her for a referral to a pain clinic or pain specialist.
How can I find an exercise program that is adjusted for physical limitations I have due to having had cancer? I can't walk like I used to, because I have nerve damage in one leg and I tire easily. I thought yoga or Tai Chi, but I can't do the normal sets. Any ideas what kind of exercise I can do or where I can find modified plans?A.
Your question identifies one of the most important aspects of cancer survivorship – continued self-care. Exercise improves post-treatment fitness and strengthens your ability, in both mind and body, to cope with the after-effects of cancer.
The first step in starting any exercise program is to consult a doctor, either your oncologist or general practitioner. Ask him/her for a referral to an occupational or physical therapist, who can help you customize an exercise routine based on your age, present fitness level, and any limitations caused by cancer or its treatment. This can help increase your flexibility and bone and muscle strength, which are crucial to improving balance and preventing falls. Some techniques can even be performed sitting or standing. For more information, see our booklet, Caring for Your Bones When You Have Cancer.
Health professionals can also help you find exercise programs in your community, such as yoga, Tai Chi, qigong, and other gentle movement classes that are tailored to cancer survivors. Such classes may also be found at your local YMCA, senior center, or Cancer Support Community. Mind-body techniques (including deep breathing and relaxation exercises) will improve your focus and energy level. Learn more by reading our fact sheet, “Relaxation Techniques and Mind/Body Practices.”
You may also want to see a neurologist to treat the nerve damage, or neuropathy, that is limiting your movement. A neurologist may prescribe medications, acupuncture, or relaxation exercises to relieve your pain and discomfort.
Another way to improve your ability to exercise is to consult a nutritionist or registered dietitian: finding a diet tailored to your specific needs can help increase your energy and rebuild your muscles and bones. The American Cancer Society has comprehensive nutrition information for before, during, and after cancer treatment.
Even if you are fatigued and tire easily, start slow. Any exercise is better than none. Consult the American Society of Clinical Oncology for information on how to practice this. Instead of walking for an hour, walk for 5-10 minutes several times a day. Give yourself credit for any exercise you do, and reward yourself when you are able to do more. Remember to celebrate each small success.
I finished treatment and would like information on fertility issues and cancer survivors. Can you help me?A.
Unfortunately, one potential effect of cancer and cancer treatment is the loss of fertility in both men and women. Depending on cancer type and treatment methods, your age, and other factors, your fertility may be compromised on a temporary or permanent basis. To determine this likelihood and possible solutions, it is important that you talk to your oncologist and a fertility specialist. The American Cancer Society has comprehensive information on the main causes and options for cancer-related infertility for women and for men. For women, causes include:
- damage to your eggs caused by certain kinds of chemotherapy
- damage to your ovaries caused by radiation
- removal of the uterus (hysterectomy) or ovaries (oophorectomy)
- hormonal treatments
If you have a uterus and ovaries, you may still be able to get pregnant. Some medical professionals recommend waiting 6 months before trying, to avoid fertilization of damaged eggs. A doctor specializing in high-risk obstetrics can check that your ovaries are still functioning and that your heart and lungs are strong enough to withstand pregnancy. If you were not able to freeze embryos (cryopreservation) before beginning cancer treatment but you still have your uterus, you may consider:
- getting implanted with donor eggs through IVF (in-vitro fertilization)
- getting implanted with a donor embryo through IVF
For men, infertility may be caused by:
- damage to your sperm cells caused by chemotherapy
- damage to sperm cells caused by radiation
- surgery to remove your testicles or prostate
- hormonal therapies
Some men recover their ability to produce sperm after cancer treatment (maybe a year or later). If you did not freeze your sperm before treatment but you can still produce sperm, you may consider:
- getting your semen analyzed to determine the level of DNA damage to your sperm
LIVESTRONG provides information on fertility options at all stages of cancer treatment to help you make an informed decision based on your individual needs. You can also find information to help deal with the financial, practical and legal aspects of infertility.
My daughter passed away from cancer about 6 months ago and I'm concerned about my 2 grandchildren, ages 7 and 4. Could you give me advice about how I might be able to help them?A.
As a parent who recently lost a child, it can be very difficult to deal with your own grief while also trying to support other family members, including children. How you support your grandchildren may vary depending on their age and how they are grieving.
Your grandchildren are most likely grieving differently than the adults in your family. You may find that they can be crying or sad one moment and then asking to play a few moments later. This is a normal reaction for children and can be helpful in their grieving. Especially with younger children, play is a way for them to express difficult thoughts or feelings that might not otherwise be shared.
You may also find the children continue to ask questions about their mother’s death or if she will be coming back. For children under the age of 7 it is difficult to understand that death is permanent, so they may continue to ask about it. While these questions can feel uncomfortable to answer, it is important to continue to address these questions in a concrete way. Saying that she is “asleep” or “passed away” may sound comforting to adults, but can easily confuse children.
Continue to love and support your grandchildren as you have been doing and take the time to listen to their questions and concerns. It is important for them to know that there are adults they can turn to.
Some families find it helpful to attend bereavement groups for children that have lost a loved one. These groups usually use play and creating art as a way to help children cope with their grief, while meeting other children who have also experienced the death of a loved one.
Here are a few additional resources that may be helpful:
If you would like some additional support, please do not hesitate to call our Hopeline at 800-813-4673 and speak with an oncology social worker who can provide support, resources, and guidance.
I've heard recently about this condition - what is neuropathy?A.
Neuropathy, also called peripheral neuropathy, is a term that describes the special kind of pain and discomfort caused by nerve damage. It is typically characterized by a feeling of weakness, numbness, tingling, or burning in the hands and feet. It can result from a number of different medical issues including infection, diabetes, kidney disease, and traumatic injury. Peripheral neuropathy can also be a common side effect of certain chemotherapy treatments, and can develop after surgery (especially for breast or lung cancer).
If you have concerns that you or a loved may be experiencing symptoms of neuropathy, be sure to discuss the issue with your health care team as there are treatments available to help control the symptoms. A typical treatment regimen may include over-the-counter or prescription medications. Your doctors can work with you to find the best treatment or combination of treatments to manage your discomfort.
For additional information, CancerCare offers many resources about neuropathy.
You can also find information through The Neuropathy Association.
I stopped cancer treatment some time ago and am still struggling with neuropathy. How long does neuropathy usually last? What treatments might I pursue?A.
Many cancer survivors experience post-treatment neuropathy. For some, the symptoms may lessen gradually over a period of weeks or months. For others, the symptoms may persist or even become chronic. It is difficult to provide a typical timeline of symptoms, because there is so much variation from case to case. Many factors impact the degree to which someone experiences neuropathy including:
- the type of chemotherapy drug or combination of drugs used
- the chemotherapy dosage
- the overall length of the treatment regimen.
In addition, each person responds differently to chemotherapy.
It’s important to seek out a consultation with an experienced neurologist if you are experiencing neuropathy. Fortunately, there are a number of treatments available to help manage the chronic pain and discomfort caused by neuropathy. For mild symptoms, over-the-counter pain relievers like Tylenol or Motrin may be adequate. For more severe symptoms, your doctor may prescribe stronger pain medication; anti-convulsant medication to help calm the nerves and central nervous system; or antidepressants to decrease the chemicals in the brain that transmit pain signals. Physical therapy may improve balance and strength while occupational therapy may improve the fine motor skills used in tasks like writing or buttoning a shirt. Alternative treatments such as biofeedback, acupuncture, or transcutaneous nerve stimulation (TENS) are also available. Your health care team can work with you to determine the best treatment or combination of treatments to address your situation.
Since other health issues may cause or further aggravate nerve damage, it is important to consult regularly with your medical team. Other underlying medical conditions can contribute to your symptoms. Diabetes, autoimmune disorders, kidney disease, or physical trauma are just a few of the other common causes of neuropathy. Your health care team should conduct a thorough assessment of your risk to determine whether other kinds of interventions would be helpful for you.
It’s also a good idea to keep track of your neuropathy symptoms, so that you can provide detailed reports about your symptoms to your health care team.
For more information about neuropathy, please visit CancerCare’s neuropathy resources or The Neuropathy Association’s website. The Neuropathy Association also offers a list of U.S. neuropathy medical centers.
Any tips for dealing with neuropathy in cold weather?A.
Cold weather poses special challenges for people affected by neuropathy. Prolonged exposure to the cold causes the body to slow blood circulation to the hands and feet in an effort to preserve the body’s core temperature. The reduced blood flow can intensify neuropathy symptoms and potentially cause further damage to already affected peripheral nerves. This is of special concern to those who experience their neuropathy pain as a numbness or tingling sensation. Their ability to measure the effects of the cold is compromised since they already experience those physical warning signals that would otherwise indicate a need to get to warmer conditions.
Tips to lessen the pain and lower your risk of further nerve damage:
- Wear warm, dry clothing in cold weather.
- Protect your hands and feet by wearing thick socks, thick mittens or gloves.
- Take intermittent breaks from the cold to reduce your exposure to extreme temperatures.
- Limit or avoid caffeine before an outing as it can temporarily cause blood vessels to narrow.
- Do not smoke as cigarette smoke can slow circulation.
- Limit alcohol use since excessive consumption can lead to vitamin deficiency which can, in turn, damage peripheral nerves.
- Incorporate exercise into your routine to improve overall circulation.
- Explore comfort measures like massage or use of flexible splints for support.
The information I’ve shared above is meant to be helpful and educational, but is not a substitute for medical advice. Please be sure to consult with your health care team for personalized advice and guidance.
For more information about neuropathy, please view all CancerCare’s neuropathy resources.
I'm having several lymph nodes removed from under the arm—what can I expect?A.
Lymph nodes are small, bean-shaped masses of tissue that are located in clusters throughout the body, including in the armpit. Lymph nodes play a crucial role in helping to fight infection; they filter and trap bacteria, viruses, and other unwanted substances in the body, so that special white blood cells (called lymphocytes) can then destroy them.
When treating cancer, doctors sometimes choose to remove and biopsy nearby lymph nodes to learn whether any of the nodes contain cancer cells. This information helps determine whether the cancer has spread to other parts of the body, a process known as “staging.” This information also helps the health care team decide on an appropriate and tailored treatment plan.
As with any surgical procedure, there might be side effects. You may sustain some degree of nerve damage during the procedure, resulting in tingling, numbness, or weakness in your arm. These neuropathy symptoms can be mild or more severe, depending on the extent of nerve involvement. You may experience swelling in the arm due to a build-up of lymph fluid that is no longer draining effectively through the remaining lymph nodes; this condition is called lymphedema. You may experience a temporary inflammation of blood vessels in your armpit as well as a higher potential for blood clotting and infection at the biopsy site.
If your health care team has recommended this procedure for you, it is likely because they feel that the benefits outweigh any of these potential risks. Nevertheless, it is always a good idea to have a frank discussion with your surgeon about possible side effects and any preventive measures you can take to lower your risk of experiencing them.
For more information about lymphedema, please visit The National Lymphedema Network.
To learn more about lymph node removal surgery, please visit The National Cancer Institute.
My father has been diagnosed with cancer and does not have insurance. He is a vet—how do I get him treatment?A.
Your father may qualify for Veterans Affairs (VA) health care benefits if he served in active military service and was released under any condition other than dishonorable. An application can be submitted regardless of how long it has been since your father’s service and discharge. Call 1-877-222-VETS (8387) or visit www.va.gov/healthbenefits for more information and to begin the application process.
If he is a Vietnam era veteran who served in Vietnam or specific areas of Korea and Thailand, he may be eligible for compensation under the “Presumptive Service-connected Agent Orange Disability Compensation.”
Other options you can explore include state and federal health care programs. Eligibility for health care is based on age, income, or pre-existing disability. To see what programs are available in your state, visit The Foundation for Health Coverage Education.
If he is ineligible for public programs, high-risk health insurance pools allow patients who have been denied coverage due to pre-existing conditions to buy a policy. The cost may be high and there may be a waiting list, but it’s cheaper than being uninsured and paying out of pocket. The National Association of State Comprehensive Insurance Plans lists high-risk pools by state.
Hospitals and clinics may offer charity care and sliding scale programs (fees based on his income). Some hospitals are required to see patients who are uninsured. Contact your local department of public health, social services, or business office of your hospital of choice for more information.
The Patient Advocate Foundation provides advice and guidance on insurance related issues.
If your father registers with the VA, they have a number of services designed specifically to support the family caregivers.
Finally, CancerCare caregiver services are free of charge and available to anyone affected by the cancer diagnosis.
My father, an Air Force veteran, died from cancer three years ago. He was exposed to Agent Orange in Vietnam. Have there been any studies on the health of children of veterans? I have been diagnosed with cancer.A.
Studies have been conducted, but the focus has been on birth defects in children of veterans who were exposed to Agent Orange. There is a registry for these children maintained by the National Birth Defect Registry. At present, there appears to be no mention of diseases that develop later in life for children of veterans who were exposed. These children are no more than 50 years old and may not have been diagnosed with other diseases yet.
If they have (as in your case), they may not be reported or the individual might not link them to a parent’s exposure. Many veterans are only now beginning to be diagnosed with various diseases that may be related to Agent Orange, so diseases in their adult children will hopefully become a new area of research.
If your father did not file a claim for service-related disability compensation, a family member can file a claim. If a Vietnam veteran dies of a medical condition considered to have resulted from exposure to Agent Orange during military service, certain surviving family members may be eligible for monthly compensation payments through the VA’s dependency and indemnity compensation (DIC) program. Many Veterans Service Organizations offer free assistance to help you present your claim to the VA. You can find a list of Veterans Service Organizations, along with eligibility requirements and procedures for filing a claim, in a guide created by the Vietman Veterans of America.
Additional resources about Agent Orange exposure and cancer include:
I am a veteran, and I was diagnosed with cancer in 2011. I am not working and I need assistance to help me pay for new glasses. I have applied for disability and was denied, but I am appealing the decision. Can you point me to an organizations that may help me?A.
If you have not already done so, please check with the Veterans Administration (VA). Veterans who meet specific VA criteria have access to vision and hearing exams in addition to free eyeglasses and hearing aids. Veterans with any compensable service-connected disability, former POWs, Purple Heart recipients, and certain housebound veterans are among those who qualify.
If you do not qualify for assistance through the VA, the Non Commissioned Officers Association (NCOA) has an EyeMed Vision Care Program which is a discount program and does have a membership fee.
Finally, there are community service organizations whose mission is to give back to the community in particular ways.
Lions Clubs International provides financial assistance to individuals for eye care through local clubs. There are Lions Clubs in most localities, and services vary from club to club. Check your telephone book for the telephone number and address of your local organization.
New Eyes for the Needy provides vouchers for the purchase of new prescription eyeglasses. Eligibility guidelines apply.
For other possible resources, please read CancerCare’s fact sheet, Finding Resources in Your Community.
How can I help my 75-year-old mother organize the different pills she takes for her cancer and other numerous health problems?A.
Health care professionals refer to taking your pills on schedule as adherence. Having more than one illness makes taking pills harder. Having multiple conditions such as cancer, heart disease, or arthritis increases the number of prescription medications. Older adults may forget to take their many medications and may have difficulty opening pill bottles.
Your mother’s health care team, her pharmacist, and you can come up with a practical pill-taking plan. You and your mother might want to schedule time with your mother’s oncologist or the oncology nurse in the doctor’s office to determine:
- when the pills should be taken
- whether any of the pills interact with each other and should not taken at the same time
- which pills should be taken on an empty stomach or with food
- how often each pill needs to be taken
- what to do if she misses a dose
The health care team can make a schedule for her pill taking, noting the hour of the day each pill should be taken and how best to take each pill. Once you have had this conversation, there are a number of tips to support your mother:
- The pharmacist can help you organize your mother’s pills in a pill-sorting box. Some even come with built in alarms.
- Encourage your mother to make pill taking part of her daily routine.
- Enlist help if your mother needs someone to refill her pill-sorting box and remind her to take her pills.
For more information, CancerCare offers a fact sheet, “The Importance of Taking Your Pills on Schedule” and a podcast, Understanding Adherence: The Importance of Taking Your Pills on Schedule.
CancerCare’s professional oncology social workers are available to provide counseling and practical help—call us at 800-813-HOPE (4673).
I can't afford to pay for my cancer medication. Is there help to pay for them?A.
The cost of your cancer medication may be a barrier to adherence or taking your pills on schedule. Because of these costs, some patients try to stretch out their supply of pills. Instead of taking them as the doctor prescribed, they take them every other day so that they do not run out of their pills so quickly. If you find yourself thinking of doing this or you are doing this, please speak with your doctor to get financial help. It is very important that you take your pills the way your doctor prescribed them. This way you will get the best results from your treatment.
There are organizations that help cancer patients with the costs of their pills. Co-payment organizations and patient assistance programs help individuals who cannot afford their medications. The following resources may be able to help you:
The website of the Cancer Financial Assistance Coalition (CFAC) has a searchable database of national and regional organizations that provide financial assistance and other services for people with cancer.
NeedyMeds helps patients without prescription coverage by providing information about patient assistance programs that provide prescription medications at no cost.
CancerCare Co-Payment Assistance Foundation (866-552-6729) provides co-payment assistance to patients who meet their guidelines as well as guidance and referrals for additional help.
Patient Access Network (866-316-7263) assists patients who cannot access the treatments they need because of out-of-pocket health care costs like deductibles, co-payments and coinsurance.
Patient Advocate Foundation (800-532-5274) offers a co-payment relief program and seeks to ensure patients’ access to care.
Partnership for Prescription Assistance (888-477-2669) matches patients to programs offering free or low-cost prescription medicines.
And finally, CancerCare’s professional oncology social workers can also refer patients for financial assistance and to organizations that offer free counseling services.
I am currently on my former employer's group insurance policy, and was able to maintain the benefits through COBRA. The policy is about to end and I have been trying to "find" another insurance carrier. I have been denied by a few agencies. Is there any advice you can provide?A.
Because you were covered by a group insurance policy and have exhausted your COBRA coverage, you are protected by the Health Insurance Portability and Accountability Act, known as HIPAA. This law mandates that people in your situation cannot be denied insurance coverage due to pre-existing conditions. However, there are some stipulations: 1) you must present a certificate of creditable coverage to the insurer, which shows that you are HIPAA eligible; 2) you cannot be eligible for government-subsidized insurance such as Medicare or Medicaid; 3) you must apply for a HIPAA plan within 63 days of losing your coverage.
The Cancer Legal Resource Center of the Disability Rights Legal Center has compiled a list of private insurance companies that offer HIPAA policies:
In many states, HIPAA-eligible individuals can buy insurance through high-risk pools, which are state-run programs that offer individual health insurance policies to residents who do not have access to group coverage and who have been denied individual coverage. The National Association of State Comprehensive Health Insurance Plans provides links to state high-risk pools.
HIPAA policies can be quite expensive. You may want to check to see if you’re eligible for Medicaid or another government-subsidized plan first. The Pre-Existing Condition Insurance Plan, a program instituted through the Affordable Care Act, also offers guaranteed access to coverage for people with pre-existing conditions, and rates are generally lower than those offered through high risk pools or HIPAA policies. However, you have to have been uninsured for at least 6 months in order to apply. To review what public and private insurance options are available in your state, visit the Foundation for Health Coverage Education’s website.
Are there programs that can help me feel better about myself? I'm 29, recently finished chemo and radiation and am feeling blah. Anything I can join?A.
Having cancer in your 20s or 30s can be an overwhelming experience, particularly once treatment is over. Adjusting to the “new normal” can be especially difficult. Connecting with others your age who have also faced cancer and can relate to those days of just feeling “blah,” can be very helpful in normalizing your experience.
There are several organizations that offer support services to help meet the needs of people coping with cancer in their 20s and 30s. These organizations can help you feel connected and secure in the idea that you are NOT alone!
- I’m Too Young For This
- Planet Cancer
- The Ulman Cancer Fund for Young Adults
- The Young Survival Coalition (for breast cancer survivors)
The following organizations offer retreats and other camp experiences for young adults with cancer and post treatment survivors:
As a post-treatment survivor, you’ll find helpful information in our booklet, After Treatment Ends: Tools for the Adult Cancer Survivor. All of our post-treatment information and support services can be found on our website. You may also call CancerCare and speak with an oncology social worker who can provide you with support and search for additional resources.
This is a hard time of year for us as my wife has cancer. Would you recommend any books about talking to and doing the best for our kids?A.
When coping with a cancer diagnosis, families often experience a variety of changes and adjustments during the holidays and other significant events. Discussing and preparing for these changes with your children can open up dialogue, elicit questions and help you to understand what your child is feeling. Although certain rituals or customs may change, it can also be helpful to honor old traditions as a way of maintaining a sense of normalcy for your children. Remember that cancer doesn’t have to be the focus of the holidays, and you have discretion over how much room cancer gets during your celebration.
Books can be helpful tools or supplements to reinforce language and ideas to help children cope with a parent’s cancer diagnosis, but should not replace a conversation. The holidays may be an opportunity to have such discussions, as you are likely joining together as a family to reflect on the past year and to make plans for the year ahead.
When selecting literature to help you talk to your children, consider your child’s age, developmental stage and maturity level. Being honest allows children of any age an important opportunity to ask questions and express how they feel. You may not have all the answers, but you can remind your child that you will always be available for them to ask.
For more information about coping with the holidays and communicating with children about cancer, read CancerCare’s Coping with Cancer During the Holidays and Helping Children When a Family Member Has Cancer, or review the following books to help you navigate these conversations:
- How to Help Children Through a Parent’s Serious Illness by Kathleen McCue and Ron Bonn (St. Martin’s Press: 1994)
- Helping your Children Cope with your Cancer by Peter Vandernoot (Hatherleigh Press: 2006)
- When a Parent Has Cancer : A Guide to Caring for Your Children by Wendy Schlessel Harpham, MD (Harper Collins: 2004)
Do you know of any organization that would help me pay someone who takes care of me? She is not related but takes me to all my appointments, cleans my house, does my shopping and anything that needs done.A.
Unfortunately the financial impact of caregiving, whether by a relative, friend, or hired help, is under recognized. The type of assistance available for caregivers may depend on where you live, the medical need for services, and your own financial situation. You could contact your state Health and Human Services Department to find out if there is a state specific program to assist with the cost associated with caregiving.
Additionally, CancerCareoffers limited financial assistance for cancer-related costs, including home care and transportation for individuals who qualify. You can call us at 800-813-HOPE (4673) and speak with a CancerCare professional oncology social worker.
I'm not a writer but am interested in journaling since recently being diagnosed. I feel I have things I want to say that I don't want to share with people. Could you give me direction as to where I should start? Are there resources that could help me?A.
Many studies have shown that writing or journaling helps to reduce stress. Writing about your thoughts and feelings, especially after being diagnosed with cancer, is a good way to help process what is happening and often helps to make the experience more manageable.
As you get started, remember not to focus on spelling and grammar – it is the content that is important. Find a place to write where you feel comfortable, a space where you will not be interrupted. Choose the method of writing you prefer whether it is using pen and paper or the computer. Try and write daily, for at least 20 minutes, stopping if you feel tired or overwhelmed. Many people find that setting aside a specific time of day, such as the morning, helps them to collect their thoughts and put them on paper.
There are websites that provide a daily writing prompt or photo – many people find this to be very helpful as they begin journaling. My advice is to sit and write, see what flows out onto your paper. If you are feeling stuck, I find Bernadette Mayer’s list of journal ideas to be a wonderful source of inspiration.
If you feel you that you would like to share your writing with others in a small group, I moderate an online therapeutic writing group at CancerCare called Healing with Words. In this group, the participants are provided with writing prompts as well as longer ongoing writing assignments focused on eight unique topics. Group members post their pieces and connect with one another by sharing their work and commenting on other’s writing works. The goal of the group is for members to learn about writing as a method of coping with a cancer diagnosis and to have a forum to share their creative pieces with others.
I have been keeping a journal since I was diagnosed. I wrote in it daily in the beginning and currently write only once or twice a week. Is it better to have a separate journal for each month or just one? I eventually hope to write a book about my cancer experience and will use my journal entries to help me. Any suggestions?A.
I think it is wonderful that you have utilized journaling and that you started writing upon learning of your diagnosis, continuing to the present time. Few experiences in life are as difficult as learning that you have a diagnosis of cancer. Powerful emotions are stirred up which can be overwhelming and frightening, with many people feeling as if their world has been turned upside down. Writing is a way to give a voice to these feelings such as fear, anger, sadness and loss which may be difficult to express aloud. Putting thoughts to paper can help people feel less overwhelmed and allow them to process these complicated emotions so they can move forward. Many studies show that in addition to helping people cope emotionally by helping them to clear their mind and achieve a sense of calmness, journaling can often provide a much needed distraction and can assist in the alleviation of some symptoms.
Writing a book, or a blog, is a great way to help others who are in a similar situation. Having written your feelings from the earliest stages of your diagnosis to the present will enable you to retrace your steps and read the emotions which were connected to that time. You are able to look back on your journey and read how you were able to cope and keep moving forward. Seeing the progress you have made through difficult and frightening times can be inspiring and sharing your story is a wonderful way to make a difference in the lives of others.
I think it is a personal decision as to how you choose to journal. Separate journals for each month are an option but I find most people use one journal, making sure to date each entry and perhaps mark each month separately in the journal. All the entries are part of your personal story so many choose to keep their writing together as parts of the whole.
If you are interested in reading stories that others have shared about their cancer experiences, an online search of the words “cancer blog” will yield many results.
You may also find this article from The New York Times helpful as you pursue publishing your own book.
Is there ever a time when it isn't good to write or keep a journal? I sometimes wonder if I feel more upset after I write about being diagnosed with cancer and what I'm feeling.A.
“Words are a lens to focus one’s mind.” – Ayn Rand
Writing can help us to decrease our stress level by helping us to process our feelings and clarify our thoughts. Journaling about your anxieties and fears without incorporating thoughts, hopes and goals can sometimes cause increased stress. It is important to take time to write about the things which bring happiness to you, too.
It may be that you need to start slowly with your journaling. Perhaps simply write for five minutes a day, not necessarily about your cancer but whatever thoughts are in your mind. You can journal about a childhood memory, reflect about a family member, or write down the last time something made you smile or laugh out loud. Select an object in your home and describe it using all of your senses. Many people find that they begin journaling by simply taking pen to paper and writing one thing each day that they are grateful for. As you become more comfortable with writing, you can slowly expand your efforts to explore how you are feeling about your diagnosis and the many emotions that come hand in hand with a cancer diagnosis.
There is no “right” or “wrong” way to journal. Writing is whatever you decide it will be – a story, a poem, random thoughts or words, memories, hopes and fears. Hopefully it will provide an outlet for your feelings and, in time, will decrease your stress level. Only you can know if journaling is a positive outlet for you. If writing causes you more upset than happiness or is causing you to feel overwhelmed, perhaps take a break and find another activity which brings you comfort during this challenging time. It is important to remember that if you are experiencing feelings of depression to seek help from a professional. Writing may be an important and helpful tool in your healing but is not the only method of support.
In my journal, I tend to write the unkind things that I wouldn't say in person. Should I destroy these journals so my loved ones don't read them after I am gone and suffer or should I leave them as an honest expression of my feelings at the time?A.
Journaling is a wonderful means of self expression, allowing us to manage our feelings and express emotions, some of which may be negative and perhaps not meant to be voiced aloud. Writing enables us to vent these feelings in a safe place: your own collection of personal thoughts.
For most people, writing is private. You would feel upset if a family member came to your home and read your journal without your consent. If you keep your journals, chances are they will be read. As you are voicing concern regarding what is contained in your writing, I would listen to those feelings and consider how these journal entries might impact those you love.
If what you wrote are feelings that you want to share, I’d encourage you to do this in person so that the emotions can be put in context and there can be a give and take discussion about these personal thoughts and feelings. If you are not comfortable doing this, I would consider the consequences that what is contained in the journals could cause hurt to your family and possibly complicate their grief. If you do not want this to occur, I would make sure to secure your journal in a safe place to ensure they remain private.
I've been on chemotherapy and have noticed a blurriness that comes and goes. Could the chemo be the culprit?A.
Many patients experience eye issues during cancer treatment. Symptoms may include irritated or dry eyes, tearing, redness, pain, and blurred vision.
First, we urge you to contact your oncologist, who should always be notified about any physical changes you may experience during your cancer treatment. If you can, try to track the timing, severity and duration of your blurriness to see if there are any patterns to report to your doctor.
You may also want to have an ophthalmologist check your eyes to rule out any concerns unrelated to cancer. Some people have other health conditions and take medications that may affect vision, and it’s important to rule out any other factors that might be contributing to your vision blurriness.
The National Cancer Institute offers chemotherapy side effect information that specifically covers possible eye changes during treatment, including that certain types of chemotherapy may clog the tear ducts, leading to blurry vision.
I'm thinking of getting a second opinion. How should I approach this? Do I tell my doctor?A.
People who are diagnosed with cancer often experience a wide range of emotions–anxiety, sadness, anger, fear, confusion, as well as a sense of urgency to get into treatment as soon as possible. Usually with a new diagnosis there is a period of time, depending on the cancer type and stage, before treatment begins. During this time, getting a second opinion is considered a routine, essential and necessary component of one’s health care plan.
Many patients feel reluctant and resistant to seek a second opinion. Studies have shown that most patients and caregivers are concerned that asking their doctor about a second opinion will create an uncomfortable relationship with that doctor, which may negatively affect their medical care. Other patients may be confused by the complexity of the healthcare system, are too overwhelmed by their diagnosis or too intimidated, or are not aware that they have that right to a second opinion.
However, most medical professionals expect a patient to get a second opinion. In fact, some insurance companies recommend, and even require, a second opinion.
Discuss getting a second opinion with the doctor who diagnosed you. Most doctors welcome a second opinion. It provides them with either confirmation of their diagnosis and treatment, more details about their diagnosis, additional treatment options or recommendations for alternative diagnoses and treatments. Your doctor may have suggestions or referrals. If not, contact a medical society associated with your cancer, academic medical institution or a National Cancer Institute designated facility. It is strongly advised that one go for a second opinion at a different medical institution, since this will involve different clinics and pathologists. If your doctor is not open to, or responds negatively to the idea of a second opinion, you may want to consider whether this is the doctor with whom you want to work.
Here is a list of situations where a second opinion may be important:
- You have a rare, unusual, terminal or incurable cancer;
- You feel uncomfortable with your doctor, the diagnosis or you need confirmation;
- Your health insurance requires it;
- You want the medical opinion of a specialist for your type of cancer;
- The treatments offered has side affects or risks that you find unacceptable;
- The treatment options will result in unacceptable or unreasonable demands on your life and your family;
- Your doctor’s treatment goals are different from your own;
- You are interested in clinical trials or alternative therapies;
- Your cancer is not responding to your current treatment.
The American Medical Association’s Patients’ Bill of Rights states that “The patient has the right to and is encouraged to obtain from physicians and other direct caregivers relevant, current, and understandable information concerning diagnosis, treatment, and prognosis.” Obtaining a second opinion is regarded as a right.
CancerCare’s professional oncology social workers can answer your questions about getting a second opinion. To speak with a professional oncology social worker, call 800-813-HOPE (4673).
I want to ask my oncologist about other types of treatments, but am concerned she might think I'm questioning what she has recommended. Is this something most patients do and how should I bring up?A.
The issue of exploring “other” treatments, which differ from recommended treatments your doctor has prescribed, is a topic that many patients would like to discuss with their doctors. However, some patients report feeling concerned that this discussion could affect the relationship and quality of their care. Patients may feel that their doctors are so busy that the appointments are rushed and information is given in unfamiliar medical terms, or that they do not know what to ask or feel intimidated.
A patient’s relationship with his/her doctor is both a professional and personal one. We believe that our doctors and the health care team will be medically effective and, at the same time, compassionate in caring for us. Good doctor/patient communication is key, and communicating effectively with the doctor is a skill that may need attention and practice.
CancerCare’s publication “Doctor, Can We Talk?”: Tips for Communicating with Your Health Care Team suggests a number of recommendations:
Before the Appointment
Remember you are the consumer, and the best consumer is an informed consumer. Learn about your cancer and possible treatments. Know who is on your health care team, including the nurses, social workers and patient navigators.
Create a journal or binder of your cancer experiences. Note the dates of your appointments, the names and contact information of your health care team, as well as a list of medications with dosages. You can also keep a diary of side effects as well as questions that you have for your next appointment. Writing down questions before your appointment will help you feel more organized. If your doctor is open to this suggestion, send your questions to the doctor before the appointment.
During the Appointment
Write down your doctor’s comments, advice and answers to your questions. If you feel that this will not work for you, bring someone to the appointment who can do this for you or ask if you can record the appointment.
Try to be focused and to the point. Explain your cancer experience clearly and briefly, including symptoms and medication side effects.
Ask the doctor to repeat a comment, use language that easy to understand, or even to slow down. If something is unclear, repeat it to the doctor as you have heard it. Be assertive but also be understanding. If the doctor is in a rush, ask if there is another member of the team, such as a nurse or social worker, who can answer your questions.
Through the use of the Internet, there is an abundance of medical information as well as opportunities to connect with people in a similar situation. Doctors report that they are very aware that patients have greater access to medical information and are often more educated about their cancer and treatment than in years past. Many doctors are prepared and are available for more in-depth discussions with their patients. Keep in mind that doctors may not know all there is to know about every cancer and its treatment. Many doctors welcome information, questions and discussions of other treatments. In fact, some physicians have stated that they have learned about other treatments because of information that a patient presented.
It is suggested to ask your doctor how he/she feels about your bringing in research and information about your cancer and asking questions about “other” treatments. This will give you some insight as to what your doctor may or may not feel comfortable discussing.
Professional oncology social workers can help you learn to better communicate with your doctor and health care team. Call CancerCare at 800-813-HOPE (4673) to speak with a social worker.
What is hospice?A.
Hospice focuses on caring, not curing, those who are terminally ill. It is considered to be the model for quality, compassionate care for people at the end of life.
Hospice involves a team approach to expert medical care, pain management and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.
In most cases, care is provided in the patient’s home, but hospice can also be provided in freestanding hospice centers, hospitals, nursing homes and other long-term care facilities. Hospice services are available to patients of any age, religion, race or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs and other managed care organizations.
Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice team make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week. The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. The team usually includes:
- The patient' s personal physician
- Hospice physician (or medical director)
- Home health aides
- Social workers
- Clergy or other counselors
- Trained volunteers
- Speech, physical, and occupational therapists (if needed)
Among its responsibilities, the hospice team:
- Manages the patient’s pain and symptoms
- Assists the patient with the emotional and psychosocial and spiritual aspects of dying
- Provides needed drugs, medical supplies, and equipment
- Coaches the family on how to care for the patient
- Delivers special services like speech and physical therapy when needed
- Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time
- Provides bereavement care and counseling to surviving family and friends.
I am a three-time, thirty-four-year-old, Californian cancer survivor, who has struggled to keep my HMO insurance my whole life, knowing that if I lost my current policy I wouldn't be able to purchase a new policy due to my pre-existing conditions. My current monthly premiums are $876/month, which I am hardly able to keep paying without going into debt. Can you give me a run down of how Covered California can help me? i.e., Do I need to be without insurance before I can be covered under the Covered California plan? Enrollment begins in October, but I won't be covered until January 2014, right?A.
Covered California (www.coveredca.com) is a comprehensive website for California residents where you can search for insurance options, compare costs and learn if you are eligible for any subsidies or tax credits toward the cost of purchasing insurance and paying for care. Enrollment begins in October, but coverage does not start until January 1, 2014.
For your specific situation, you can talk to a representative by calling 888-975-1142. Also, you will find a detailed FAQ on the Covered California website. You do not need to be without insurance before you are covered and should keep your current insurance until January 1, 2014 when a new plan would become effective if you decide to change your coverage.
I have a advanced cancer, and my employer insurance will end the end of September. I can not afford the COBRA payments. Does the ACA address this?A.
The Patient Protection and Affordable Care Act addresses access to health insurance coverage. The legislation does not make any changes in COBRA. However starting October 1, 2013 you may be able to enroll in an insurance plan that is more affordable than your expected COBRA payments. That coverage would not be effective however until January 1, 2014.
Please visit www.healthcare.gov to learn more and to be directed to your state health insurance marketplace website. There you will be able to search insurance options and learn if you are eligible for any premium and deductible subsidies based on your income. The site also discusses other insurance options for patients until the law takes effect in January. Most exchanges will also have representatives for you to talk with regarding your options.
My 77-year-old mom has been diagnosed with cancer. As a stroke survivor with diabetes, she is at high risk for surgery, which seems to be the preferred option for treatment. I don't feel like I am asking enough and/or the right questions. I am meeting with an oncologist for guidance. However, I want to be sure I am dotting all "i's" and crossing all of my "t's." Is someone available to speak with to help guide me in the right direction for starters?A.
When you and your loved one are facing a new diagnosis it can be overwhelming and difficult to know what steps to take. Meeting with an oncologist to discuss your mother’s treatment plan is incredibly important, especially given her multiple health issues.
Some questions to consider asking:
- What is the recommended treatment and side effects?
- How will the treatments affect other co-existing health issues?
- What is the goal of the treatment?
- What other treatment options are available?
During the meeting with the doctor take notes or ask the doctor if you can record the meeting using a tape recorder or other recording device. If there is something you don’t understand don’t be afraid to speak up!
Your mother may also consider getting a second opinion. While some may feel uncomfortable bringing this up with their oncologist, medical staff understand and respect the difficulty of making treatment decisions and can often provide referrals for another opinion. They can also provide copies of your mother’s records so that tests don’t have to be repeated. No matter what you and your mother decide, communication with the medical team is key.
Please know CancerCare is here for you. Our oncology social workers are available to assist you and address the many issues that come up as you and your family go through this. We can help you with questions to ask your medical team and also provide support. You can contact us through our Hopeline at 800-813-HOPE (4673).
You will find more tips in our fact sheet, “Doctor, Can We Talk?”: Tips for Communicating With Your Health Care Team.
My 69-year-old father is going through chemotherapy now and has little to no appetite and vomits up whenever he does eat. He is okay to drink meal-replacements such as Ensure. Should I mix in protein powder (like the kind you purchase for weight training) into these Ensure drinks to give him extra protein? Will this help him or will it cause a negative effect? Is there anything else I can do to help him have enough calories through the day?A.
While we are not medically trained at CancerCare, as oncology social workers we are trained in assisting you address concerns that accompany a cancer diagnosis. Nutrition is an essential part of your father’s health and integral part of his cancer treatment. It is important to bring these questions regarding his nutrition and also the difficult side effects he is experiencing to the medical team. Your father’s oncologist, physician assistant or nurse may have some beneficial medical advice to assist your father reduce side effects and maintain his nutrition. A registered dietitian can also be an important member of your father’s medical team and his oncologist can provide a referral if needed. Before you meet with the medical team make sure to write down your questions and concerns to assist you and also take notes during your meeting. This can be incredibly helpful so that you don’t forget what questions you want to ask and also have written notes of what the medical team said. Good communication with the medical team will increase your father’s quality of care. For more info read our fact sheet, “Doctor, Can We Talk?: Tips for Communicating With Your Health Care Team.
My best friend is an only child and struggling to hold on to her job. Her elderly father has cancer and recently developed an infection following surgery. His doctors feel that he would do better at home with my friend acting as nurse, taking care of his wound, etc. Unfortunately, she has been ill herself and has already had to take too much time off of work. Her father's condition is not terminal, so hospice is not an option. Finances are limited. What options for in-home care do you recommend?A.
Finding home health care can be daunting, but there are some resources out there to help your friend get started. The first step is to locate local home health providers:
- Obtain referrals for home health directly from his doctors and his medical team. Often the medical team can provide a list of home health providers in the area.
- Contact the local Department of Aging or local state Ombudsman’s Office and ask for referrals.
- Medicare’s Home Health Compare tool enables you to find and compare Medicare-certified home health care providers.
- Family Caregiver Alliance also has a Family Care Navigator tool where you can locate home health and various caregiver resources.
Once your friend begins to contact home health services she will need to determine who can provide the best services for her and her father:
- Shop around: It’s important that your friend feel she and her father are getting the best possible care. I recommend interviewing at least two agencies and ask for several references. You can also check with your local Department of Aging and the Better Business Bureau to learn more about the different agencies and the quality of their care.
- Determine the services you require and find out how much they will cost.
- Does the agency take her father’s insurance? What cost will he be responsible for?
- Ask about any financial grants available to assist with the cost of home health care.
Below are some links that may be helpful in finding financial assistance:
- Medicare has a page dedicated to financial resources.
- Eldercare also has resources and links for various financial resources including home health care.
Finally, caregiving for your loved one, while rewarding, also comes with many challenges. One of the most important aspects of caregiving is actually caring for yourself. Caregivers often put their own needs aside; however, this can lead to many issues including decrease in physical and emotional health. Remember that when your needs are taken care of, you are better able to care for your loved one. Read more about caregiving in our booklet, Caregiving for Your Loved One With Cancer.
Know that CancerCare is here to help. We provide many services for caregivers including individual counseling, support groups, Connect Education Workshops and helpful information. Learn more about our caregiver services or call our Hopeline at 800-813-HOPE.
I have cancer and have been struggling to be a “normal” parent. My biggest challenge is disciplining my children because I feel guilty that I’m tired and not available as much to them. Is there any info out there about raising children while living with cancer?A.
Your question is one that we often hear. Without a doubt, cancer can impact your home life, and this disruption may cause a change in your children’s behaviors. Children want consistency and actually like guidelines, but it may be harder to set boundaries when you are not feeling well due to your diagnosis or its treatment.
There are some things that you can do to reduce stress, and perhaps make things a little easier in your home:
- Give hugs and say “I love you”: The primary need of children is safety and security. Let them know that they are loved and heard, and that in no way did your cancer impact your love for them.
- Allow yourself “me time”: As a parent – with cancer or not – it is vital that you remember to take care of yourself. Self-care is rejuvenating; it fuels the system both physically and emotionally. It is also a good lesson to impart to your children.
- Be on the same page: Explain to your children, in age-appropriate terminology, your cancer and what the treatment will be. Use the word “cancer.”
- Be available: Let your kids ask questions, and give honest responses.
- Explain your treatment and what the side effects might be ahead of time: Prepare your children for the “what ifs.” Hair loss, fatigue or nausea may be side effects of your treatment. Maybe they want to meet your oncologist, or see where your treatment will be. Seeing, touching and feeling can make things less scary.
- How you act and react is most likely what your children model their behavior on: A parent who reacts to their cancer by shutting down, having life revolve around the diagnosis, and creating a home life ensconced in cancer may have young ones mimicking that behavior. A parent who acknowledges the cancer, addresses the possible limitations, yet continues to live, is building resilience in their children.
- Let the school know: The more people on your children’s team, the better. Inform the principal, guidance counselors and teachers of your diagnosis.
- It is okay to ask for help: Others want to help, and letting them do so is a gift you give them. Take friends up on their offers. Think about what might help you, and ask.
- Draw a “circle of love”: Younger kids are visual. Sit down with them and help them draw a picture of all the people who love them. Let them know that if you aren’t here for them, all these other people will make sure that they are “okay.”
- Journaling: Older kids may have questions for you that they are uncomfortable asking. Give them a book they can jot their questions in and leave by the side of your bed. This will allow you to open up a meaningful discussion.
- Schedule in some fun: Cancer is part of your life, but don’t allow it to be your family’s whole life. Watch a funny movie, dance and sing in the kitchen, work on crafts. Continue to grow, learn and explore as a family.
The most important thing to remember is that while you may have cancer, your children are so happy to have you there. As a parent, you are a symbol of safety and security, and just having you nearby can bolster your children’s sense of comfort.
Two good books that might be helpful to read for more information include:
- Raising an Emotionally Healthy Child When a Parent Is Sick by Paula Rauch, M.D. and Anna Muriel, M.D.
- When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy S. Harpham.
A kindergartner’s twin brother died from cancer. What are some things to best help the family and the surviving child?A.
This family is adjusting to a major loss, and now more than ever, they need patience, love and understanding. The first rule in helping is: “Listen.” What are the parents telling you? Most often, the best way to be of service will come out in their words, although probably subtly.
Grief is an ongoing and lifelong journey, and there is no right or wrong way to grieve. In terms of the parents, very often, those who are grieving will forget to take care of themselves. This can take a toll on their health and can impact the household even more. You may need to remind the parents of the importance of self-care. Let them know that you are there for them, in whatever way they need. If they are not in a place to ask for help, be proactive. Some suggestions that might be helpful include cooking meals, cleaning, organizing, helping with thank you notes or grocery shopping. Just as friends rallied around them when they were taking care of a sick child, they now need a different kind of support, as they work on adjusting to their loss. Your helping out with everyday tasks may allow them more time for self-care, as well as more time with their child who is now adjusting to life as an only child.
At a kindergarten age, generally, children think in more concrete terms and do not understand the concept of “forever,” so it would be likely for this grieving child to think that his twin will come back. The family may need to remind the child that his sibling will not be coming back. Using euphemisms for the word “death” can be confusing to children, as in, “My brother is lost, and I am going to find him!” If the family has a belief system that includes heaven, the child may need to know that they cannot visit the twin in heaven. Younger children are less able to use words, but will express themselves in games, play or drawings. Through play, the parents might be able to pick up on thoughts or concerns that the child finds too complicated to express directly.
Children also use “magical thinking.” This child may think that what happened to his twin may also happen to him. Lots of reassurances need to be given, and questions need to be answered honestly with the child. More than ever, this child will need hugs and kisses and “I love you’s.” Many studies indicate that twins have a deep level of connectedness, and this may make this new separation more difficult. The child may also experience survivor’s guilt, and an open discussion to address this is important.
When life can be so challenging, it can be hard to express that life can also have joy and beauty. In fact, it may be impossible to see it at times, especially when there is such profound loss. But it important that children learn over time that even though life may be difficult or unfair, wonder and joy can still exist. We need to keep the sense of joy, wonder and happiness alive in children.
I think it is both very helpful and important to keep the memory of the twin alive in the home. But how is that memory kept alive? Every family is different. The family may want to plant a tree, or create a memory garden. Perhaps they create a spot where photos of the twin are kept, or maybe the pictures remain throughout the house. If the family is spiritual, maybe they want to create a special prayer that will become part of an evening ritual.
Additional resources for families coping with loss include:
How do I go about seeing if I can have my dog trained to be a therapy dog (and for me to become a volunteer)?A.
Thank you for asking this important question. First, I want to say that it is quite an admirable act to seek out therapy dog training with your dog – this type of work is very powerful and can enrich the lives of others in need while connecting you with your community. Witnessing the healing power of the human-animal bond can be a fulfilling and meaningful endeavor and both you and your dog will learn and grow from this experience. It has been well documented that interacting with a dog (or other domesticated animal) can reduce blood pressure, ease stress and anxiety, and contribute to an overall sense of well being. Specifically, for those with compromised immune systems because of cancer or other illnesses, as well as those with a history of trauma, abuse or mental illness, this type of therapy is truly a gift. The presence of a loving, warm and accepting creature can provide relief to those coping with all types of illnesses and can create a deep sense of connection, healing and hope.
There are different ways to approach the process of volunteering with your dog. Some organizations require you to go through a registration process, whereas others require you to obtain certification. Registration requires you to have your dog evaluated by a therapy dog evaluator, then your dog can go on to become registered within your state. Certification requires a bit more involvement with the dog and handler upfront (called a “therapy animal team”), but this route also provides more comprehensive training and support from a team of professionals. The steps to become a certified therapy animal team include a required evaluation of your dog’s basic abilities and temperament, as well as an assessment of your own comfort with your dog and the public. Next, there are several classes that you and your dog will attend to become certified and registered in your state. If you would prefer to pursue the certification route, there is an organization called Pet Partners that conducts a training called “How to Become a Registered Therapy Animal Team.” If you would prefer to simply have your dog registered, you can contact Therapy Dogs International to get you started
Whichever route you choose, this is a wonderful and worthwhile endeavor. Good luck to you and your dog as you learn to help others together.
My mom has been in and out of the hospital due to complications from her chemo. Her dog stays with me when she is hospitalized, but I know it's hard for her to be away from him. Is there any service that would bring pets to visit her? Who would I ask?A.
I’m so sorry about your mom’s most recent difficulties with her chemotherapy treatments; this must be causing such a disruption in her life, from both a medical and emotional perspective. With that said, your idea is a wonderful one! You are identifying a key component in improving her health and well being. It sounds like her dog is not only a valued family member, but a lifeline, and I can understand why it would be so important for her (and you too) to have him by her side as she copes with the challenges of these complications. While recent research supports the idea that a pet can benefit those who are ill in many ways, most health care settings lag behind in terms of implementing these ideas. In good news however, there are more and more hospitals employing programs that allow patients’ pets to be brought in for visitation. This article featured by the New York Times can help to guide you in the process of talking with the hospital staff about this. You can even present this article to your mother’s medical team to help them to better understand the idea and its benefits.
Also, this organization’s mission is to connect humans with their pets, especially in a health care setting. Perhaps they can be of help: Pets Are Wonderful Support (PAWS)
I sincerely hope that you are able to help your mom to connect with her dear dog. Good luck to you!
My grandmother has cancer. I'm worried about her, but even more so, I'm worried about my mom. She tries hard to be strong for everyone, but she is just so run down herself. She seems uncomfortable letting us be there for her. Any advice?A.
Many caregivers find it difficult to accept help. Caregivers often feel a sense of responsibility to take care of things on their own in order for them to feel that they’re doing “enough.” However, this can become quite burdensome, and often leaves the caregiver feeling run down, just as you mentioned your mom is. This fatigue may also be a sign of distress and can indicate a need for more support.
Letting your mom know that you are concerned about her may initiate a conversation about the importance of self-care. It is very true that in order to be a good caregiver, it’s important to take care of oneself – this often starts with the most basic of needs – healthy eating, sleeping and exercise habits. The American Cancer Society’s Caregiver Self-Assessment Questionnaire may identify specific areas where your mom can use more support. This might give you a better idea of how to help her, and how she can help herself.
Framing the conversation about self-care in a way that allows your mom to see how taking these measures for herself will also benefit her mother may make it easier for her to accept. CancerCare has a fact sheet entitled “Caring Advice for Caregivers: How Can You Help Yourself?” that may also give some helpful tips to make all of this more manageable.
Similarly, you may be able to assist by offering to help with specific tasks, like taking your grandmother to treatment or grocery shopping. This approach is generally more helpful than asking how you can help, as it gives your mom one less thing to think about or to delegate. This way, you are giving your mom a moment of respite without sacrificing your grandmother’s needs.
And talking with other caregivers may give you and your mom an additional layer of emotional support. Connecting with others in a similar situation may offer other ideas and suggestions on how to better manage these responsibilities. We also offer telephone and online support groups for caregivers and can help you find support groups in your area.
How can I support my cousin who has cancer without saying something stupid or wrong that would upset her more?A.
It is common for family and friends to be unsure of how to best help support a loved one with cancer. There are so many different ways to be supportive, and everyone has a different set of needs as they cope with a cancer diagnosis – this means that there’s no one right way to provide support. However, you can’t know what your cousin needs or how you can help if you aren’t acknowledging her experience with cancer.
Your cousin probably has many mixed feelings given the news of her cancer diagnosis; keep in mind that the diagnosis itself is upsetting in its own right. That said: it’s okay to ask her how she is doing and to let her know that you are available to talk or listen when she needs it. Opening the doors for communication will give her an opportunity to let you know whether she is comfortable talking about her feelings or not, which may also help you to better gauge how to be helpful. Regardless of where she is with this, she will likely appreciate your willingness to listen. And if even if she’s not “there” yet, knowing that you’re open to this type of conversation may leave her more willing to take you up on your offer when she is ready. If you are still unsure of what to say, it may be helpful to read our fact sheet, What Can I Say to a Newly Diagnosed Loved One?
People with cancer also often express a need for “normalcy,” so don’t forget to have conversations with her about regular things like television, movies, books and other current events, just as you would prior to her diagnosis. Talking about more simple things may give her a break from thinking about cancer all the time – for many people with cancer, this is helpful.
I'd like more information about how to help a close friend being treated for cancer. I'm also wondering if a support group could help me too?A.
One of the most powerful ways to help support a friend with cancer is to be emotionally available. Providing a listening ear and an openness to talk about even the most difficult of topics can provide your friend with a real sense of comfort and give them a safe place to share whatever is on his or her mind. Know that you don’t always have to know exactly what to say; simply being present and supportive goes a long way.
Offering specific tasks may help your friend to know exactly what you can provide and when. Caregivers can be helpful in day-to-day chores like laundry and transportation, and can also help coordinate medical appointments, get to know the medical team and advocate for their loved one’s needs both health-related and otherwise. CancerCare’s publication Caregiving for Your Loved One With Cancer offers more information about how to be helpful.
Many caregivers find that support groups are helpful as they give you a space to process your own feelings and get support and insight from others who can relate. Support groups often provide practical tips on managing the tasks of caregiving, help in finding balance between caring for yourself and a loved one, and can provide a powerful level of camaraderie. Seeking support by connecting with a support group or counseling can be a healthy outlet that many caregivers appreciate and learn from. CancerCare offers free counseling and support groups for caregivers.
My dad was diagnosed with cancer last month. He and my mother live in another state, and I have a family of my own so I can't be there to help them out on a daily basis. What can I do to support them from far away?A.
Being a “long distance” caregiver is a unique experience that can be especially challenging. Working to find balance between your own needs and the needs of a loved one with cancer can feel overwhelming for anyone in the caregiver role. But remember, there are many ways you can be supportive and involved in your loved one’s care regardless of the distance between you.
Offering emotional support is one of the most helpful things that you can do for your loved one. Simply checking in and letting your dad know that you are thinking him can go a long way; call, email, Skype, send a card or visit when you can. Those reminders not only show that you care, but may also leave you feeling more connected.
You can also help your parents with day-to-day tasks like managing bills, paperwork and getting organized. Similarly, you can help them navigate the medical system. Dealing with insurance companies, remembering doctors’ appointments and accessing resources can be overwhelming. You can help your family with this by taking on some of the responsibility, communicating with their doctors and nurses, and staying informed. This can alleviate some of the practical challenges for them, while keeping you in the loop.
There are also programs such as My Cancer Circle which exist to help caregivers easily enlist additional support. This online forum creates a sense of community that helps the caregiver, but also ensures that their loved ones needs are met. Family, friends and community members are often looking for ways to help: My Cancer Circle allows them to sign up for specific tasks, like cooking meals or providing transportation, which can help them feel useful and give you some respite and comfort in knowing that these needs are covered.
And lastly, it’s important that you take good care of yourself and your family. Know that there is support available to you, too. CancerCare offers free counseling and support groups that specifically address the needs of caregivers. We offer those supportive services in person, over the phone and online. These services can help you to take care of yourself and your needs, and put you in touch with other caregivers who can relate. This support can be a comforting and powerful experience, so please call us at 800-813-4673 for more information.
My 59-year-old mom had a tumor removed in 2002 and although her MRIs remain clear, her mobility is fading. My dad is her primary care giver for 11 years now, and he is exhausted. I let him vent and encourage where I can, but I am unable to physically help him with mom because she is fairly overweight. He is frustrated with everything, insurance, paperwork, and just the situation of her not being able to walk. They have hired a part-time caregiver to help shower mom and help with light house duties. What is the best thing for a caregiver at this point? How does one get help?A.
Caregiving for a loved one with limited mobility can be physically and emotionally overwhelming. Help comes in many forms, and it sounds like a combination of both practical and emotional support might be most helpful to your family now.
Asking for help when needed is an important part of the caregiver experience. It sounds like the part-time help your parents have enlisted is a good starting place to help ensure that her basic day-to-day needs are being met. Checking in with local community agencies, religious organizations or hospital social worker may provide additional information on respite care or volunteer services to help your dad manage the practical aspects of caregiving.
You can ask your mom’s doctor about possible mobility devices (e.g., walkers, seat risers or swivel seats) that can help her move around more easily. Also, you could ask for a referral to an occupational therapist who might be able to address and work on specific mobility issues.
In some cases, a person’s physical needs exceed what family members or friends are able to provide, regardless of how much they want to or try to help. If you are finding this to be true, you may want to explore USA.gov’s Caregivers' Resources as they may help offer information on assisted living and nursing homes, and other resources and support for caregivers.
It’s also important that you and your dad are taking care of yourselves. CancerCare’s workshop, Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally, may offer some tips on managing the emotional impact of caregiving. CancerCare’s staff of licensed oncology social workers can also provide free counseling and support groups (including online and telephone support groups for caregivers) to you and your dad to help you cope with your role as caregivers.
A teacher asked me (a school social worker) how to help an 8-year-old student with his/her own cancer diagnosis and loss of hair. Any advice?A.
Children who are diagnosed with cancer face unique challenges and adjustments. Parents, teachers and other caretakers often struggle with how to explain cancer and its effects. When speaking with this child’s teacher, you may want to consider the following points.
Children understand simple and clear explanations best. Provide concrete, age-appropriate information when speaking to this student. Explain that there are special medications that they will need to take that will help stop the cancer from growing. These medications may also cause his/her hair to fall out. Some children will want to hear a more detailed scientific explanation while others will be satisfied with more general information. Reassure the child that hair loss is temporary and explore whether he/she would feel most comfortable wearing a hat, scarf or wig in the meantime.
It is common for children to feel an array of feelings when they begin losing their hair including anger, sadness, embarrassment and fear. Let this child know that it is safe to express those feelings to you and his/her teacher. Validate the way they feel and remind him/her that although it is upsetting to deal with these side effects, it means that the treatment is working hard to stop the cancer and make his/her body healthy again. You may also want to preemptively prepare this child for questions his/her classmates may ask and come up with ways the child will feel most comfortable responding. While some children would rather not discuss their diagnosis with classmates, others may be more open with regards to what they are going through. There is more than one right way for the child to interact with their classmates and understanding your student’s specific wishes can inform the way you and the child’s teacher help the child’s classmates support the child with cancer.
You may find the following books helpful when explaining cancer and its side effects:
- Chemo, Craziness & Comfort by Nancy Keene is a book for children between the ages of 6-12 that provides clear explanations about cancer and treatment.
- KidsCope has a free comic book called KemoShark that helps explain cancer and chemotherapy
The American Childhood Cancer Association provides books to families with a child with cancer free of charge. Educating the Child with Cancer: A Guide for Parents & Teachers edited by Ruth Hoffman is a book for parents and teachers that provides guidance regarding the impact of cancer on a child’s education. It is free for families and for the child’s teacher.
For more information, support or guidance, call us at 800-813-HOPE (4673) to speak with an oncology social worker.
I've been recently diagnosed and I'm not sure quite how to tell my kids. Is it ever a good idea to not tell them?A.
Disclosing a cancer diagnosis to children is never easy. It is common for parents to wonder whether their children will be better off not knowing about their diagnosis. However, children sense when something is wrong and being honest with your children will help them feel secure and confident that they can trust you. It will also prevent them from coming up with even scarier possibilities.
When disclosing your diagnosis, choose a quiet time when your children are well rested. Prepare what you would like to say beforehand so that you feel comfortable with the language you choose to use. Many parents find it helpful to have this conversation with their spouse or another adult present.
When explaining cancer, use simple and age-appropriate language. Explain your treatment and prepare your children for the changes they can expect. Reassure them that they will continue to be cared for throughout your treatment. Encourage your children to ask questions. If you don’t know an answer to their question, be honest and let them know that you will try to find out.
For more information, please read CancerCare’s publication Helping Children Understand Cancer: Talking to Your Kids about Your Diagnosis.
You may also want to read a story together about cancer and its side effects. The American Cancer Society has several books that can be helpful when explaining cancer to children:
- Our Mom Has Cancer helps children understand and cope with a parent’s cancer (ages 5-12)
- Our Mom Is Getting Better and Our Dad Is Getting Better helps children understand a parent’s special needs when recovering from active treatment (ages 5-12)
- Because Someone I Love Has Cancer offers activities to help children navigate a loved one’s cancer experience (ages 6-12)
KidsCope has a free downloadable comic book called KemoShark that helps explain cancer and chemotherapy to children.
To speak with an oncology social worker for more information and guidance regarding supporting children affected by cancer, call 800-813-HOPE (4673).
I am just getting back on my feet after treatment. I want to go back to work, but would like to go to school for an advanced certificate or degree. Is there any financial aid specifically for new survivors?A.
Congratulations on finishing your treatment and please let me be part of celebrating this huge accomplishment! Life after treatment can be a time of renewed focus, greater creativity and new commitment to educational opportunities. Priorities shift and the way you decide where and with whom you devote your time is different than before you were diagnosed. This can be both exciting and scary, as the realization that you are in fact a different person than before treatment and that returning to the “way things were” is not entirely possible or realistic. The financial strain from cancer treatment can leave your bank account unable to accommodate this dedication to personal advancement and renewal. I wish you continued success and excitement as you learn more about yourself and discover how to advocate for what you need now. Thankfully, there are several resources out there and many organizations that have compiled a list of the different types of scholarships and financial assistance.
One good place to start is The Smart Student Guide to Financial Aid.
The same organization that may have brought you discounted prescriptions, NeedyMeds, also offers a list of scholarship resources.
The Jackie Spellman Scholarship Foundation and the Michael A. Hunter Memorial Scholarship offer assistance for people pursuing graduate studies who have been affected by leukemia or lymphoma. They offer scholarships ranging between $1000 and $3000.
Additional resources include:
For those still undergoing treatment but would like to continue their higher education, the National Collegiate Cancer Foundation offers annual nonrenewable $1000 scholarships for college students whose lives have been impacted by cancer.
The Patient Advocate Foundation has a Scholarships for Survivors Program.
The SAMFund has a Surviving and Moving Forward scholarship program for cancer survivors between the ages of 17 and 35 living in the United States.
The Ulman Cancer Fund has a National College Scholarship Program for young adult cancer survivors and young adults impacted by cancer.
I would love to go to a spa or retreat after my last treatment, but what I am finding is extremely expensive. After a loss of income for a year and medical expenses, there's not much left for anything. Is there a retreat or spa like this for cancer survivors? Maybe a place that insurance would help cover costs?A.
There is so much information available about retreats and spa-like getaways that include massage and yoga as part of their healing package. Searching for “retreat cancer patients” brought up numerous websites that have lists about retreats and weekend getaways all across the country. Many of them seemed free or offered at a greatly discounted rate. In a time when financial assistance is often few and far between, the “in-kind” assistance seems to be available and donated in abundance.
Here are resources for finding retreats for cancer survivors:
- The Gathering Place’s Cancer Retreats
- Foundation for Women’s Cancer’s Retreats for Women with Cancer and Their Families
- Cancer.Net’s Camps and Retreats for Families and Children Affected by Cancer
Here are a few examples of possible retreats:
- Casting for Recovery offers free fly-fishing weekends in 33 states for female breast cancer survivors. Founded on the principles that the natural world is a healing force, you don’t have to know how – or even like – to fly fish; the main goal is bonding. The retreats are held from April to November and also incorporate counseling and educational services.
- Mary’s Place by the Sea is a quiet place of retreat and healing in Ocean Grove, NJ with massage, reiki, guided meditation, nutritional counseling, cooking classes, counseling and yoga.
- Stowe Weekend of Hope is a three-day gathering held each spring in the resort town of Stowe, VT, for both male and female cancer survivors and their families. Activities include educational sessions with top doctors presenting current medical research in all areas of cancer treatments, workshops by cancer type, movement and exercise classes, a three-mile run and more.
- Little Pink Houses provides free week-long beach retreats in private homes in North and South Carolina for breast cancer patients and their immediate families.
In terms of insurance covering spa or wellness treatments, rehabilitation and medical massage clinics will sometimes accept various types of insurance for medically necessary massage and physical therapy. Spa and massage treatments can offer a host of physical and mental benefits which are continuously being researched, and medical professionals are viewing them more and more as a way of supporting the whole patient. These types of treatments can improve the outlook people have about their treatments, enhance body awareness, reduce pain and swelling, improve lymph node drainage and minimize the effects of radiation and chemotherapy treatments. Many spas have specialized oncology massage therapists who have experience working with cancer patients and know how to tailor treatments. As you’re researching spas, keep in mind the products they use and the level of hygiene the spa offers. As some products can irritate your skin and you may be more susceptible to infections, it’s important to only visit spas and retreats that practice proper cleaning and disinfection schedules.
My boyfriend was diagnosed with cancer and is receiving treatment. However, since treatment began, he keeps out of my way as much as he can. He finds excuses not to meet me, refuses to take my calls and doesn't even reply to my short messages. Now I am worried about his cancer and feel so sad about his attitude. Can you give me some advice?A.
This is a common concern of family and friends. There are several factors that can lead to this sudden change in relationships and personality. For patients, it often starts when they hear the words, “you have cancer.” Most of us know someone who has had cancer so hearing the words “you have cancer” brings up fear and uncertainty. A newly diagnosed patient begins to recall watching others go through it and before they have a lot of information they start to worry that the same experience is going to happen to them; especially if those they knew had difficulties.
Because a cancer diagnosis requires undergoing a lot of tests, managing an often complicated health care system, and coping with increasing financial concerns, many patients become overwhelmed and shut down emotionally to focus on the practical issues they need to address immediately. During the very time that family and friends want to help most, the patient might seem distant and pull away.
Once he or she starts treatment additional changes can happen. Some might be permanent, raising concerns about the patient’s ability to be the same partner and provider they once were. At some point though, the emotions finally come to the surface and people begin to look at what they have been going through. That is often the time they reach out to a counselor, clergy or open up with loved ones.
During all of this, family and friends are anxious themselves and try harder to help the patient, which might just push him or her further away. This adds to the confusion during a very stressful time and can escalate the distance. Since cancer also affects those who care about the patient, this is instead a good time to step back; let them know you are there but also get support for yourself. Literature and support groups for caregivers go a long way toward normalizing your experience, providing education on cancer and its side effects, and can offer new insights.
Time and time again I am reminded that cancer is a process of learning, changing, confronting and reintegrating. It’s a process for both patients and caregivers. Sometimes it feels like a roller coaster and other times like an endless journey. Relaxation exercises can help with the stress. And sometimes stepping back a bit can eventually bring caregivers and patients closer together.
Here are resources I think can be helpful to you:
As caregiver for my husband, I have no interest in the holidays. I know this is a disappointment to our adult children, and our young grandchildren don't understand why I just don't care about shopping, etc. What can I say to them to tell them I love them but I am just so sad, other than just that?A.
Caregiving is a difficult and an often unappreciated part of living with a person with cancer. It is physically and emotionally draining, if not exhausting, and others may not be aware of the difficulties you are facing. While the holiday season may mean time off from work for some, you may feel that there is little or no time off from your caregiving duties.
Tell your children and grandchildren that you love them as much as ever, and that you would like to do everything that you have done in the past, but that you may not be able to right now. Everyone will feel more comfortable knowing what you are thinking, and will feel reassured that while the way you need to spend your time has changed, your feelings for your family haven’t.
Explain to them what you are not up to doing, and ask them if they could help you with some of the things that you would normally do alone. Giving your adult children (and your grandchildren, to the extent that it is appropriate) new tasks and responsibilities would likely make them feel good about being able to help, and create even stronger bonds among you. You can reassure your grandchildren that although you don’t feel up to doing the things that you have normally done with them in the past, that this doesn’t mean that you won’t do those things again in the future.
If possible, see if there are people close to you who can look after your loved one while you find some rest or diversion, so that you may enjoy holiday activities with others, or just spend some quiet time alone or with a close friend.
For more general tips on how to support yourself as a caregiver, read our fact sheet “Caring Advice for Caregivers: How Can You Help Yourself?”
My mom is receiving palliative care currently at home. I really am feeling the pressure with this time of year with expectations (e.g., attending holiday parties and birthdays). While I mean to be attentive, I find myself forgetting to get gifts, or just not feeling like going out. I know my friends ultimately will understand, but is there a way to explain this to them without seeming completely selfish when I just need a few days to myself?A.
Caregiving is a difficult and an often unappreciated part of living with a person with cancer. It is physically and emotionally draining, if not exhausting, and others may not be aware of the difficulties you are facing. While the holiday season may mean time off from work for some, you may feel that there is little or no time off from your caregiving duties. It stands to reason that you may forget to buy gifts or not feel like going to parties. You aren’t being selfish, you are sensing that you need to take some time for yourself, which is necessary. You are spending both mental and physical energy caring for another person, and that is no small thing.
Communication is so important—without having a direct exchange with your friends it will be difficult to know exactly what their expectations are, or to what extent they understand your situation. One thing to do before you reach out to your friends, is to clarify how you are feeling and what you want to say. Perhaps you can set aside a few minutes to write down your thoughts and feelings about holiday pressures and expectations, and what it is that you would really like the holiday season to be for you. Having done this, you might call your friends—or send what you have written as a letter or email. It is likely that they will be able to empathize. You might begin the conversation by saying how much you appreciate their friendship, that the parties and events sound enjoyable, but that right now you would like their understanding—your responsibilities are too great to let you participate in all their activities. By stating these things simply and directly you are being sincere and won’t come across as selfish or thoughtless.
I was diagnosed with cancer a few months ago and I don't feel much like celebrating the holidays. I'm worried I'll be a downer for my family and I'm not sure how to act.A.
It makes sense that you don’t feel celebratory—you may be coping with fatigue or pain, and feel uncertain about the future. While your self-expectation may be that you should be smiling and happy at this time of year, the truth is no one can ever be sure how he or she might feel on any given day, and cancer, especially, doesn’t go on holiday. But try not to let your fears of being a “downer” keep you from staying close to the important people in your life. Although people close to you may not know how to approach the subject of cancer, that doesn’t mean they won’t be understanding, or don’t want to help. If you are open to talking with them, you may find that friends and family are more compassionate than you anticipate. While not everyone may be equally helpful, raising the subject of cancer may bring many of your family members closer. Here are some practical tips that could be helpful to you:
Listen to your body. Gauge your physical limits to give yourself time to rest and to manage your energy.
Manage expectations. Remember that you can only do the best you can—if you are not feeling well during a holiday, remind yourself that it is just one day of the year, and that the people you want to be with will care about you just as much even if you don’t feel like celebrating. Give yourself permission to be less than “joyful” all the time.
Communicate. Talk with friends and family members a few days before you see them. Let them know how you are feeling and that you would like their understanding. Since it is likely that not everyone you know will respond the same way, spend a moment to consider how much you want to share and how much a given person will be able to hear.
Plan ahead. Don’t hesitate to ask for what you need. Most often family and friends want to help, but they may not know how, or what to say. They may be relieved if you reach out to them to let them know what will make you feel comfortable. Create a list of tasks or that you can ask others to do for you that you need help with.
Keep in mind what is most important to you. Holiday traditions are important, but that doesn’t mean altering them is bad—if you aren’t able to do exactly what you have done in the past, there is nothing wrong with starting new traditions. And while gifts are nice, it is the sentiment behind them that is most memorable. Simply being with people who care about you is a gift, both to them and to yourself.
For additional tips, please read CancerCare’s fact sheet, Coping with Cancer During the Holidays.
My father has advanced cancer and this may be his last Christmas with us. How does our family make this holiday not put too much pressure on his mental state and make the focus on just trying to enjoy the time we have left with each other?A.
Thank you for the thoughtful question. As I am answering after Christmas, I hope it will be this will be of use—perhaps at New Year’s or a birthday, but I think the same principles hold true.
The answer depends on how what your father wants—or possibly, how much you are able to figure out what he wants. If your father is aware that this may be his last Christmas (or birthday, etc.) and you feel he is able to talk with you about this, simply ask him what he wants and would make him most comfortable or happy. Would he like to have just a few people around him and a quiet dinner? Would he like to watch you and other relatives have the same Christmas routine as always? Or does he have something else in mind entirely?
Too many options can overwhelm anyone, so you may want to present only two or three choices. For instance: “Dad, what would make you feel best? Just immediate family at home? Family and close friends?” And so forth. If he can’t or won’t choose, go ahead and choose yourself. You love him. So your decision won’t be “wrong.” The most important thing is to let him know how happy you are to share this holiday with him. Tell him what you love about him. What you appreciate. Encourage other people to do so to.
If your father is unable to understand, or not willing to accept that he is near the end of his life, you will need to rely on your judgment and draw on your experiences with him. Has he ever given you his opinion about another person in a similar situation to his, or spoken about the final days of his own father? This may give you insight into what he would like now. Think back: historically, what has a holiday meant to him? Has the focus been on a family dinner, or seeing relatives from out of town or gift giving or an activity? Keeping things simple often helps. You may want to choose just one easy thing.
It sounds as if you have had many joyful holidays together, and while there is comfort in the repetition of activities from year to year, remember that not every year is the same, and that your father may not have a lot of time, but he has your love and devotion and that is the biggest, most lasting and important gift of all.
I've recently started treatment and I'm trying to find things that can help support my 13-year-old such as groups, counseling, etc. Do you have recommendations?A.
Children and teenagers experience a range of feelings after a loved one is diagnosed with cancer and it is common for parents to wonder how they can best support their children. While some teenagers may outwardly express their fears, questions and concerns, others may be less expressive. Let your son/daughter know that you are available to talk when he/she is ready. Encourage him/her to come to you with questions and that if you don’t know an answer you will work together to find it out.
Together with your son/daughter, identify the people he/she would feel comfortable turning to for support. For example, you, other family members, teacher, school social worker, religious advisor or family friend. It can be helpful to inform your child’s teacher and school social worker about your diagnosis so that they can provide additional support to your son/daughter at school.
In addition to individual support, teenagers can benefit from participating in a support group. Teenagers often feel isolated and alone as they cope with the cancer diagnosis of a loved one and support groups provide the opportunity for teenagers to meet others who know what it’s like to have a loved one with cancer. This gives them a safe space to express how they feel, give and get support from their peers and learn healthy coping skills.
The Cancer Support Community lists support centers in several states that provide support groups for children and teens. You may also want to speak with the social worker at your hospital or treatment center about local services available for children and teens.
The American Cancer Society may also provide a listing of support services available in your area. They can be reached at 1-800-227-2345.
To learn more about supporting a teen when a loved one has cancer, please read Helping Teenagers When a Parent Has Cancer. An additional resource you may find helpful is our Connect Education Workshop, Helping Children and Teens Understand When a Parent or Loved One Has Cancer.
CancerCare offers free telephone counseling and support to parents who have been diagnosed with cancer. To speak with an oncology social worker for more information about finding the right type of support for your child based on his/her unique needs, call our Hopeline at 800-813-HOPE (4673).
I am 19 and my mother was diagnosed with cancer over a year ago. She has had an operation and been through chemotherapy treatment and is technically 'cancer free' now, however we have been told she has a very slim chance of living past 5 years. My mother has completely changed, and I don't know how to talk to her as she seems like a completely different person since chemo. Is this normal?A.
Undergoing treatment for any type of cancer is an intense experience, not only on an emotional level, but spiritually and physically as well. Often, those that have completed cancer treatment face a new type of difficulty; they must now acknowledge that their life is forever changed. They must deal with a new reality as they shift focus from coping with treatment to adjusting to their “new normal”. I use the term “new normal” because whatever was ‘normal’ for your mother before her diagnosis no longer rings true to her.
It is possible that your mother seems “like a completely different person” since her treatment because she must deal with the uncertainty and ambiguity that can persist following the completion of treatment. Although she may be “cancer free”, she may feel that her life is limited by the five year prognosis which has made her feel vulnerable and afraid. Many emotional challenges arise after treatment because people have focused all of their time and energy on physically fighting their diagnosis; they have neglected the emotional aspects in the process.
Encouraging her to maintain healthy, supportive relationships with those most significant to her is a crucial part of the healing process. You have to ask yourself, “How has my mother changed and is there is different way I can try talking to her?” She might feel alone in her experience and need your support more now than ever before. Does she have emotional support or is she speaking to a therapist or counselor? Anxiety and depression are common in those who are going through or have completed treatment for cancer. It is important to recognize any red flags for these disorders in order to gain the necessary support.
It is also good to be aware of the different types of support available:
- Professional support provides you with information, resources and counseling
- Peer-to-peer support reduces your sense of isolation and helps you connect with others who share similar concerns (e.g., Cancer Hope Network)
To access these types of support, speak with an oncology social worker or join a post-treatment support group at CancerCare. A social worker can also help you identify local support services; contact our Hopeline at 800-813-HOPE to speak to an oncology social worker for more information.
My co-worker and friend recently lost her husband of 23 years to prostate cancer. I want to be there for her, but I'm not sure how best support her. Could you give advice on what I might say or can do?A.
It can sometimes be difficult to know what to say and/or what to do for someone who has experienced a loss. Feeling uncertain in terms of what to do and/or say is however common and normal. Death is not an event or human experience that can be “fixed” or “made better”. And, the struggle of loss and grief can certainly bring up feelings and experiences that we may have encountered as well.
Although we may find ourselves not knowing what to say to someone who has experienced a loss, there are ways in which we can offer support. An important way in which we can provide support to someone who is grieving is to offer what I suggest is the “gift of presence”. Simply letting your friend know that you are there to listen to her story and embrace her can be extremely supportive and healing. Remember that the grief experience is a process and everyone will grieve and heal in their own way and in their own time. This means that the support you offer your friend may change with the flow and movement of her grief and healing process. Grief and healing are interconnected and can often be experienced simultaneously. You may have to let your friend know therefore that the vicissitudes and range of emotions that may be experienced at times, although disconcerting, are normal. Allowing the process to be what it is, listening to your friend’s story, giving her a safe space, and offering validation of her grief will convey the message to your friend that you are “present” to her and care. Helping your friend find a support group can also be very helpful in connecting her to other people who are experiencing similar feelings and struggles.
You may want to read CancerCare’s fact sheet, How to Help Someone Who Is Grieving which may offer further suggestions and tips on how you may be of support to your friend.
My older sister recently died and my friends have urged me to join a support group to help me deal with her death. I'm not quite sure how to go about doing this - could you help direct me?A.
Often, when we are grieving the loss of a loved one, we may find ourselves questioning whether or not our feelings are normal. We may discover ourselves asking, “are there other people out there who are like me and experiencing similar feelings as I am”? Bereavement support groups can be exceedingly helpful in lessening feelings of isolation and aloneness. Not only do these support groups help us cope with the loss we are experiencing, but they offer fertile ground for camaraderie and support. Support groups provide us a safe space where we can share our story with others, grieve, and begin the road to healing.
Grief is a journey. Although everyone in a bereavement support group is brought together by the commonality of a loss, it simultaneously is important to remember that everyone copes with loss differently. In a support group not only will you be able to listen to the ways in which other people cope with a loss but you may also learn and develop new strategies for coping with your loss as well.
Many times people who engage in bereavement support groups frequently feel like “family”. This is a common experience as group members in sharing stories and feelings create lasting and powerful bonds with each other. Participants in support groups validate our experience and emotions. They reinforce our strengths when we may experience intense feelings such as sadness, anger or confusion. Group members support us as we remember our loved one and go through holidays, anniversaries, birthdays and other significant milestones.
In closing let me mention that although bereavement support groups can certainly strengthen and foster our capacity to cope with loss, it is important to keep in mind that support groups may not be for everyone. If this should be your experience, there is nothing wrong with you. Perhaps individual bereavement counseling would be more helpful to you during this period.
My husband died about five months ago and I think I should be feeling better by now, but honestly, I feel worse. Is there something wrong with me?A.
Let me first begin by mentioning that there is nothing is “wrong” with you and what you are experiencing at the moment. This experience is normal and actually quite common. Many people with whom I have worked have indicated discovering themselves on an emotional roller coaster at times. People often believe that grief and the healing process manifests itself in a linear fashion. We assume that we simply move from one “stage” to another. The grief experience however is quite contrary to this perception. Remember that grief and healing is instead an evolving and dynamic process. Changes in how we feel physically, emotionally and spiritually are to be expected. There will be days in which you may feel good about yourself and life and conversely there will be days when you may feel everything around you has fallen apart. Our feelings and experiences are similar to the tides of the ocean; the tide flows in and the tide flows out. Keep in mind that everyone is different. People cope with loss and heal in their own way and in their own time.
Healing is not simply about picking up from where we left off as if nothing ever happened. Rather, it consists of an attempt to create legacy and keep the memory of our loved one alive. It is important to allow the process to be what it is and to allow yourself to be where you need to be. Try not to judge yourself nor be critical of your feelings and experience. Nurture your soul during this period and always reach out to those around you who are supportive and caring.
Engaging in individual bereavement counseling, participating in bereavement support groups and reading literature pertaining to loss, grief and healing can be exceedingly helpful in normalizing your experience and validating your feelings. It can also afford you a safe space to share your story so you may not feel so alone.
My mom has been living with metastatic breast cancer for about 8 years and she's at the end of her life now. She has started hospice care and her prognosis is that she has about 4-6 months left. I don't feel particularly sad because I've kind of prepared myself for this along the way and my family has always been good about informing me at each step in my mother's care. Also, I'm worried about how I will feel about her loss after she's passed and worried that the grief might come all at once. What do you think?A.
I appreciate your honesty in raising this important issue. The concern you are experiencing over whether or not your grief might come all at once is commonly voiced by people who are expecting the death of a loved one and/or are bereaved.
Although we may discover ourselves anticipating a loved ones death and therefore beginning to grieve, the actual death of our loved nonetheless is traumatic and can lend itself to our feeling overwhelmed. Feeling “prepared” that is, cognitively for a loved ones death, does not necessarily mean that at the same time we are fully “prepared”, emotionally. This is normal; though I have to admit it can be disconcerting at the same time and feel quite unpleasant. Many people who have shared their stories with me have often described themselves as being on an emotional roller coaster. You may experience many feelings such as disbelief, anger, sadness, and confusion either individually, or perhaps all at once. It is important to remember however that everyone grieves a loss in their own way and in their own time. There is no set way in which to grieve. Although the literature and others around us may paint a landscape for us of what grief may look like, there can be no blueprint or roadmap for the grief experience. Remind yourself that the emotions you may be experiencing in the moment, no matter how palpable they may feel, will not last forever. As with the changes and movement of the tide, there will be days when you may feel good about yourself and life and days when you may not feel this way. Once again this is normal. As time progresses the moments when you feel good about yourself and life will begin to take precedence over those moments of grief and uncertainty. And, last, it can be helpful to view the grief experience as an important part of the healing process as well. Although the grief may be intense at times and the range of emotions you may be experiencing may feel consuming, simply allow the experience to be what it is. Try not to judge the process nor be critical of yourself. This is the body’s way of re-grouping and attempting to heal itself after a traumatic event. Learn to trust and honor the body’s wisdom.
In addition to validating your emotions and grief, I would encourage you to reach out to people who are supportive of you. Surrounding yourself by people who are nurturing and life affirming can help strengthen your capacity to cope with your loss and ensure the healing process.
How can a cancer survivor deal with fear of recurrence?A.
Fear of recurrence is very common and understandable in the context of your recent cancer experience. There are several ways in which you can manage this anxiety in order to live a full and meaningful life:
- Ask your oncologist about chances of recurrence, regular tests to schedule to check for signs that the cancer may have returned and steps you can take to increase the chances that it will not.
- Assess your life and look at your daily routine. Are there things you could improve about your diet? Ways to increase your physical activity? Things you can do to help you relax? To sleep better?
- Read our publication After Treatment Ends: Tools for the Adult Cancer Survivor.
- Listen to our podcast, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit.
- Consider talking to a professional counselor, such as an oncology social worker at CancerCare who can suggest ways to manage your anxiety and help you process your feelings.
- Many cancer survivors also find support groups very helpful, as they can talk to other survivors with similar worries and fears and learn new coping skills. View support groups at CancerCare.
- Listen to our podcast Fear of Recurrence and Late Effects: Living with Uncertainty.
- Talk to your trusted friends or family members about your concerns. Even if there are just one or two people with whom you feel comfortable sharing your fears, this can be a powerful way to get some relief from your anxiety.
- Make sure you continue to engage in hobbies and socialize with your friends is an essential and healthy form of distraction.
- Listen to our podcast Survivors Too: Communicating With and Among Family, Friends and Loved Ones.
- Reflect on what makes your life meaningful, both before and after cancer. What values and activities are important to you? How can you continue to honor those things you hold dear? Focusing on the bigger picture can help minimize the anxiety and remind you what you can do in the here-and-now to live a full life.
- Read our publication Strengthening the Spirit.
- Listen to our podcast Finding Hope and Meaning After Treatment.
I will have a new MRI this week and find out if the cancer treatment did what they wanted it to do. I know I will have MRIs for the rest of my life which I pray is very long. How do you not worry that it will come back? How do I just let it go and live my life?A.
Anxiety about recurrence is a natural and common part of cancer survivorship, but it does not have to take over your life. There are strategies you can use to manage and minimize your worries so that you can live your daily life and still do the things you enjoy.
For example, before each test, scan or follow-up visit with your doctor, write down all of your questions and concerns. The simple act of writing it all out in one place can be helpful in containing your anxiety, and you’re less likely to forget something that you wanted to ask your doctor. Take notes when you’re with the doctor: becoming more informed about your diagnosis can help you control your fears about things that might not be realistic or likely. Make sure to ask about ongoing steps you can take to improve your overall health or to reduce the likelihood that the cancer might return: are there certain foods you can add to your diet? Ways to increase your physical activity? Other activities to help lower your overall stress? Physical signs or symptoms you can look for to stay on top of possible recurrence?
Another way to minimize your anxiety is to schedule time for it each day (until you no longer need to do so as frequently). If you intentionally set aside a half-hour of your time to think and worry about a recurrence, you may find yourself thinking less about it during the rest of the day. Just make sure you stop thinking about it when your time is up (set an alarm if you need to)! If your worries and negative thoughts do spill over into the rest of your schedule, try not to judge them. Instead, ask yourself how they are helping you in that moment: Is it helpful to jump ahead to the future and imagine the worst? It might be more helpful to observe that you are feeling anxious but cannot know for certain what will happen, and then gently turn your thoughts toward the things you can control in your life. What can you still do and enjoy now?
Try visualization or imagery exercises to increase your mindfulness and awareness of the present moment. You can also increase the number of pleasant activities in your daily life. Make more time for play, rest, exercise, humor, music, art, nature, etc. Doing more of what you love will leave less time to worry. Even if your concerns about cancer recurrence remain in the background, they do not have to consume your life.
I am a newly diagnosed cancer patient. Needless to say, I'm on an emotional roller coaster as my life has changed drastically. The side effects have cause multiple issues, many not directly treatable and as a result I worry and experience anxiety on a number of issues: relationships, fertility, reoccurring cancer, finances and life expectancy. My question is how does a cancer patient find a therapist/psychiatrist (particularly one with experience with cancer patients)? Secondly, should cancer patients see a therapist or a psychiatrist?A.
I’m sorry that you are under so much stress and dealing with so much. It is perfectly understandable that you would have a lot of anxiety around these important issues. Because the mind and body are so connected, side effects from treatment often impact one’s state of mind as well. Getting emotional support as you face this experience is wise.
Here at CancerCare, we are oncology social workers and offer in-person counseling for people in New York City, Long Island, and some parts of New Jersey and Connecticut. If you live outside of those areas, we offer short-term telephone counseling to help you cope with your cancer experience.
To find a longer-term therapist in your area who is skilled in working with people affected by cancer, try:
American Psychosocial Oncology Society (APOS), which offers a free referral service to help you find a mental health professional (psychiatrists, psychologists, clinical social workers and other counselors) in your area: 866-276-7443.
Help Starts Here, through the National Association of Social Workers offers an online directory of clinical social workers, psychologists, psychiatrists, and other licensed professionals. You can search each database for clinicians who have experience in cancer issues.
Most therapists are social workers and psychologists, but some psychiatrists also provide therapy in private practice. Because of their medical training, psychiatrists are the only mental health professionals who can prescribe psychotropic medications. Many people see social workers, psychologists or other types of counselors for talk therapy while also seeing a psychiatrist for medication evaluation and monitoring, on a less frequent basis.
When choosing a therapist, one of the most important criteria to keep in mind is the rapport you have with him or her. You may have to shop around and it might take several tries. After each initial visit, ask yourself: How did I connect with that person? Does it seem like he/she “got” me? Can I talk freely with that person? Only you can decide which therapist is right for you. Pick someone with whom you can be open and honest, and who can support you through this challenging journey.
I am 28 years old and it seems like I'm the only one my age with cancer. Is there anyone else like me out there?A.
Hearing that you have been diagnosed with cancer as a young adult can be overwhelming and isolating, however you are not alone in this. The answer to your question is yes, there are other people out there like you. There are several organizations that can help you connect with other people your age who have been diagnosed with cancer. At CancerCare, we offer services for young adults who have been diagnosed with cancer through individual counseling, either face-to-face or by phone. We also offer a Young Adult Patient Support Group for anyone between the ages of 20 to 39 who is located in the New York City area.
These organizations specialize in providing support and services to young adults with cancer and might be helpful as well:
My 24-year-old son was recently diagnosed with cancer and I think it would be a good idea for him to join a support group. How do I convince him?A.
As a caregiver, you may feel that your son should join a support group to help him navigate the challenges he may face in regards to his diagnosis and treatment. The difficult part of all of this is that your son must be able to make that decision on his own. As a young adult facing cancer, he may need to understand what his cancer diagnosis and treatment will look like before he is able to give and get support from a group. Managing doctor’s appointments and scheduling treatments can be taxing, however addressing the benefits he may find in a support group is the first step in educating him about how a support group can help.
Support groups can offer a network of comfort and encouragement, a place of unbiased support and an environment that a young adult does not have to explain what he or she is going through because the other group members will understand. CancerCare offers a face-to-face Young Adult Patient Support Group for anyone located in the New York City area. In addition, we offer several patient online support groups. Your son may also want to reach out to Stupid Cancer, an organization that addresses several young adult cancer issues through advocacy, support and more.
As a caregiver, you may want to look into services for yourself. You can contact CancerCare’s Hopeline at 800-813-HOPE (4673) to learn more about our services for caregivers. In addition, you may find some of our publications helpful in navigating your new role as a caregiver.
I'm a kindergarten teacher and one of my students is going through a rough time because his mom has cancer and is undergoing treatments. Since she is not well, she does not have a ton of energy to play with him. We are concerned that over the summer he will go backwards by not socializing with other children. Any suggestions for free to cheap summer camp options for him? Or other resources? He lives in Brooklyn, NY.A.
Navigating a cancer diagnosis can be overwhelming and difficult, especially as a young adult caring for a young child. It seems that your student’s mother may be in need of support for herself so that she can better understand the impact of her diagnosis and how it affects her son. We provide a publication to help parents talk to their children about cancer. You may want to provide your student’s mother with this publication, in addition to CancerCare’s information. CancerCare provides free counseling services and financial assistance for cancer patients; you can reach us at 800-813-HOPE (4673) to speak directly with an oncology social worker about our services and how to get involved. We can help young adult patients to better understand what they are going through and assist in cope with the emotional and physical changes someone may experience during treatment. Receiving a cancer diagnosis as a young adult presents several challenges and can feel isolating. Let your student’s mother know that there are support options available for her and that she is not alone.
We also offer in-office counseling services for children as young as 5 years old. You may want to speak to your student’s mother to see if she wants to reach out for support for her son. Our children’s program, CancerCare for Kids, may be able to help your student understand his mother’s diagnosis and talk about how her cancer diagnosis has impacted him.
Additional resources include:
What are support groups and how can they help me? How do I know if they're right for me?A.
A cancer diagnosis can be very isolating. Regardless of whether you are a patient or a caregiver, you can be immersed in reacting and adjusting to various aspects of the disease. The responsibility to find, manage and pay for care can be hugely overwhelming. It’s hard to feel hopeful, or have any sense of confidence in your ability to cope or make appropriate decisions, if you are feeling small and powerless and very much alone in the experience.
That’s where a support group can be helpful. It provides a chance to meet and interact with other people who can understand your experience. While friends and family members might be uncomfortable, maybe feeling useless or scared, not knowing what to say or do, the members of the support group, with the guidance of a trained moderator, can be there with you in your process.
In addition to lessoning one’s sense of isolation, support groups can be a source of valuable information. Not surprisingly, members find that sharing resources and coping skills can be highly rewarding, whether on the giving or the receiving end of the transaction. Topics often include where to find reliable medical information, how to communicate with doctors, challenges of treatment and coping techniques. Much of one’s experience in a support group depends on the chemistry of who is in the group and how it is moderated. One thing common to most groups is the potential for strong emotional expression, which can be uncomfortable for some people. Other factors to consider are how you feel sharing things about yourself in a group of people, and whether or not you can meet any attendance guidelines the group might have.
Bottom line? If you are feeling alone and needing information and emotional support, a group might be a valuable way of connecting with people to help you cope with your situation. If you have questions, reach out to the moderator so you can get the information to make an informed decision.
I'd like to organize a support group for cancer survivors and people facing a cancer diagnosis. What do I need to do to get one started?A.
Support group has become a much broader term than many of us realize. What type of support group do you intend to start? At CancerCare, we offer three modalities of support group: including in-person, which is the format that most of us think of when we think of a support group; telephone, which is more like a weekly conference call that is moderated by an oncology social worker; and on-line, which is a message board format. Each modality has different features as well as limitations.
After deciding what modality of group will be most beneficial to your potential group members, you will also want to determine the content, structure and policies. Is your group about members sharing their experiences? Do you want an educational component with guest speakers? How often are you going to meet and where? Who is eligible to participate in the group? Who is going to moderate the group? What are the rules for discussion and maintaining privacy? What mechanisms are in place to enforce your group’s guidelines?
Familiarize yourself with existing groups. Local medical centers often offer support groups that are open to the community. Contact national advocacy organizations for specific cancer diagnoses, for example Us Too for prostate cancer, to find out if they have a chapter where you live. Cancer Support Community has a good overview of the process of creating a support group from scratch.
Are there support groups geared towards grandparents of a child with cancer?A.
While there may not be a local support group geared specifically toward grandparents of children with cancer, it is probably worth inquiring about caregiver support groups at your grandchild’s treatment center. At CancerCare, a grandparent whose grandchild has been diagnosed with cancer is eligible for any of our caregiving groups, whether in-person, over the telephone or online.
Like other caregivers, grandparents are likely to have a hard time adjusting to their grandchild’s diagnosis. You may need a place to express intense emotions, including fear, anger, sadness or grief in the presence of people who have had a similar experience. A support group can also be a place to exchange helpful information on coping and various other means of supporting oneself and one’s family.
Whether or not you find an accessible support group that specifically matches your demographic, it can be very helpful to connect with other people who care for a person with cancer. If there are no support groups in your area, perhaps you can organize an informal group that meets at a church or community senior center.
This booklet by the British organization The Children’s Cancer and Leukaemia Group, is a useful guide to grandparents of young children with cancer, and includes information on various ways support yourself, your children and your grandchildren in reacting and adjusting to your grandchild’s diagnosis.
I am seeking a support group for children under age 12 whose single mother is in stage 4 cancer. Please provide any available options.A.
Our Connecticut office currently offers a support group Crafting Ways to Cope for Children Who Have a Parent With Cancer. This group is for children ages 5 to 12 who have a parent with cancer. The group is led by an oncology social worker and offers craft activities as a way to help children ask questions, express feelings and share concerns about their parents.
Otherwise, you probably want to check with the mother’s treatment center to see if they provide a children’s support group. You can also contact your local affiliate of Cancer Support Community in order to get more information about what type of children’s program they offer.
CancerCare provides a number of publications, including Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis that address helping children who have a family member with cancer. Communication is the number one priority, since even young children can often sense when something is wrong, and if no one explains what is happening, will often imagine something worse than it really is, or even blame themselves. How and how much is communicated depends on the child’s unique personality, but providing an ongoing chance for them to express themselves, asking questions and sharing their feelings, is helpful for children of all ages.
Finally, it’s important to let children know that even though some other things around the house are probably going to be different for a while, that the child’s parents/grandparents/family members love for them hasn’t changed a bit.
Last week I told my son that I had cancer and we have barely spoken about it since. What can I do to help support my son?A.
As a caring parent you want to help your son understand what you are going through. Children want to know the facts and how they will be affected.
Children, and especially teens, are mostly focused on themselves and their own day-to-day life. You may notice your child is still focused on school, friends, and other activities. That doesn’t mean your child is ignoring your diagnosis. It takes time for a child to mentally process this kind of information and he may not completely understand the implications of your diagnosis until he notices physical changes or if there are disruptions in day-to-day life. Here are some age-specific strategies for communicating with children about cancer:
If your son is under 5, he is likely to ask you a question or bring up your cancer when he is most closely engaged with you one on one. His questions will most likely be brief and concrete, such as: What does your cancer look like? Does the medicine taste bad? He may be scared that cancer is contagious or that he might get cancer too. Your answers should be brief, factual and in words he understands.
Children ages 6-11 typically are more interested in the mechanics of treatment. The “killing” of cancer cells and seeing your treatment as a “battle” or “fight” — whether or not you yourself use these images — is very likely how your son will think of your experience. Some parents are comfortable using this language; others may choose to describe their experience using non-violent imagery. Either way is okay.
If your son is a teenager, he will be wrestling with a variety of conflicting thoughts and feelings. He will want to ask questions but may not want to add to your stress by asking questions or showing concern. He may feel sad about the situation but think it is “unmanly” to have that feeling. He will be certain that none of this “shows” at all but you will see it clearly in his face and demeanor. If you ask him questions he will most likely tell you that he is “fine.” Try not to force the conversation and give him space to process his emotions on his own.
No matter what age your son is, he will let you know when he is ready to talk. There may be times when you need to start the conversation because you are going to lose your hair, or need to rest more, or will be hospitalized. In these cases, be factual, brief, and use words you know your son will understand. Children and teens like to be kept in the loop and the more they are informed, the less anxious they will be when these changes happen. Also, periodically check in with your son, ask if he has questions or wants to talk in order to show him that you are comfortable talking about it and that you are available to talk whenever he is ready.
Here are some additional tips:
- Let your child know that you are always available to answer their questions
- Try to keep family time consistent. When possible, eat meals together, have a movie night, etc.
- Ask your child if there are aunts, uncles, school counselors or other professionals (social workers, psychologists) that they would like to talk to about how they are coping. Sometimes children are more comfortable talking to someone other than the person who is diagnosed
- Find age-appropriate support groups for your children that will help them feel connected to other children who have a similar experience
Here are some publication and book recommendations for further information:
- Helping Your Children Cope with Your Cancer by Peter Vandernoot (Hatherleigh Press, New York)
- Kemo Shark by Kidscope, Inc. (www.kidscope.org). A cartoon illustrated book featuring “Kemo” the shark who explains how chemotherapy works to fight cancer. Also available in Spanish. Ages 3-12.
- What About Me? A Booklet for Teenage Children of Cancer Patients by Linda Leopid Strauss. A book addressing the specific needs of teens when their parent has cancer.
I have a 14-year-old son who doesn't seem to want to talk about my cancer at all. I know it's hard for him, but it also can't be good for him to keep things bottled up. What should I do?A.
Teens are at a stage in life when they are trying to develop their own identity, sense of self, and independence. Your son’s not wanting to talk about your cancer is a common reaction many teens have. Teens may feel that their questions or concerns might be hurtful or even scare the parent. It’s important for you to keep communicating with him and show him that it is okay to talk about feelings and ask questions. Ask him what he already knows or thinks about cancer and try to provide concise information that will clear up any misinformation he may have gotten from peers or the internet. Keep him up to date about your cancer and treatments, and let him know that if he has any questions or concerns he can always talk with you about them.
It’s important to respect his privacy and to offer him additional support that may be helpful to him. Identifying a relative like an aunt or uncle, or a teacher, coach, or school counselor with whom he can talk more openly can give him a sense of feeling more in control of his situation, and allow him to voice questions or concerns he may not want to with you.
If you haven’t done so already, I would also encourage you to inform his school. Teachers and school counselors can be supports for both your son and yourself. They can watch for and inform you of any concerns or behavioral changes your son may be displaying, and can advise you should they feel your son might need additional professional help.
The following publications may help as you navigate the sometimes tricky territory of having cancer while parenting a teen:
- CancerCare’s Helping Teens When a Parent Has Cancer
- CancerCare’s Helping Children When a Family Member Has Cancer
- How to Help Children Through a Parent’s Serious Illness by Kathleen McCue and Ron Bonn (St. Martin’s Press: 1994)
- When a Parent Has Cancer : A Guide to Caring for Your Children by Wendy Schlessel Harpham, MD (Harper Collins: 2004)
Can taste buds still be affected two years after completing chemo treatments?A.
Experiencing lingering side effects after cancer treatment is over is common and taste buds can be part of that reaction. These side effects can be especially frustrating when you expect to feel better as soon as treatment is over and especially when you are expected, by others, to return to your pre-treatment self. It is such an important quality of life issue.
Some clients have said that, over time, their taste buds returned to normal. Other people said that, over time, their taste buds had returned but were different. Share your concerns and questions about continuing taste bud side effects with your oncologist, your medical team and what can be done to address them. Also, consider speaking with the oncology nursing staff. They often have recommendations that are practical and manageable.
I’d recommend keeping a detailed daily log of the side effects you are experiencing—this makes it easier to report details to your doctor and nurse. In the log, note what the foods are and how they taste differently. Also note the times of day in your log. This may help the oncology team guide you in figuring out solutions for you.
You may also want to check out Cook For Your Life, an online food and recipe site that assists people who are in, or who have finished treatment, with foods and recipes that might be more palatable, considering the changes in tastes. Imerman Angels is a peer support program that team up people who have gone through similar circumstances. You may want to contact them to ask for a “buddy” to discuss these issues with.
Our Connect Education Workshop Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit can help you prepare for your appointments.
Connecting with others in a support group for people who are post-treatment can be helpful. A support group is a place to share tips and ways of coping with other survivors who might be experiencing similar lingering side effects. We offer support groups over the telephone, online and in person (New York City area). You can also speak with a social worker who will locate groups in your area (800-813-4673).
How do I find financial help for a friend whose daughter has cancer (age 5)?A.
Families with children undergoing cancer treatment often face overwhelming financial costs. In addition to the medical costs, many parents find that their child’s intense treatment schedule can lead to loss of income and other unexpected expenses such as transportation and lodging.
There are a number of national organizations that can provide limited financial assistance for treatment-related expenses, including CancerCare and the National Children’s Cancer Society. You may want to recommend that your friend contact these organizations directly to find out if their family is eligible for assistance. You may also refer them to our fact sheet, Financial Assistance for Children and Teenagers.
It can be challenging to find help with daily expenses, such as rent, utilities and food. There may be local organizations that provide assistance for families facing serious childhood illnesses. The best way to learn about these local organizations is often the social worker at the child’s cancer treatment center. You may want to recommend that your friend find out more about local resources by dialing 211. This number will connect to the local United Way, which can link families to community programs.
Your friend is fortunate to have your support, as cancer treatment can place significant stress on a family. One of the easiest ways that you can help your friend and reduce the stress on this family is to provide practical support. You may want to ask this person directly if there are other ways you can help their family, such as offering to provide child care if there are siblings or running an errand. This type of practical assistance from a friend can provide a measure of relief to caregivers.
A cancer diagnosis has a profound effect on families, and a childhood diagnosis comes with its own unique challenges. It can be difficult to talk to young children about cancer, and to know how to help them communicate their feelings and fears. Your friend may want to check out CancerCare’s fact sheet Supporting a Child With Cancer.
CancerCare’s professional oncology social workers can also help in locating additional financial assistance and provide support and resources around caregiving for a child with cancer (800-813-4673).
I'm a patient navigator and have had a few requests from patients and their families for LGBT resources (groups and information mainly). Any recommendations?A.
Although everyone’s experience with cancer is unique, we do know that the LGBT cancer experience can present many challenges, just a few of which include increased cancer risk, lack of social supports, and impacted communication and comfort with health care providers. The cancer experience, in addition to the stigma around sexuality and/or gender for an LGBT person navigating the medical system, can have an negative effect on a person’s health, both physically and emotionally.
As a patient navigator, you have the opportunity to humanize a setting which often feels dehumanizing for patients, particularly those that identify as LGBT. By making yourself aware of the resources that exist and learning to ask questions that show your sensitivity, you can make a big difference. Access to resources that are LGBT-focused and/or friendly often depends upon the area you live in. While many larger, more metropolitan areas have LGBT community centers and/or services, smaller communities often lack LGBT-specific resources, which can leave LGBT people feeling isolated or marginalized. However, there are a number of national organizations that provide a multitude of services for LGBT individuals with cancer and their loved ones, as well as their health care providers. These organizations do incredible work to address existing disparities through their research, advocacy, education, outreach and direct support services.
A great place to start is by reading LGBT Patient-Centered Outcomes: Cancer Survivors Teach Us How To Improve Care For All, a report published by the National LGBT Cancer Network. The National LGBT Cancer Network works to educate, train and advocate for LGBT cancer survivors. What’s fantastic about this report is the way it uses language, including quotes and stories, from actual LGBT cancer survivors, which gives you powerful insight into what LGBT cancer survivors find meaningful and relevant in their work with you, your team and your agency. In addition to providing this report on their website, they offer many other useful resources, such as a database of LGBT-friendly screening and treatment facilities, information on cultural competency training for health care providers, and a cancer risk assessment tool for LGBT people. They currently offer two online support groups for cancer survivors.
Secondly, the public policy advocacy organization, GLMA: Health Professionals Advancing LGBT Equality (formerly the Gay & Lesbian Medical Association), has many resources for professionals as well as patients, including Top Ten Issues to Discuss with Your Heath Care Provider for Lesbians, Gay Men, Bisexuals, and Transgender People. They also have a wealth of information on trans health resources.
For LGBT seniors, SAGE (Services and Advocacy for Gay, Lesbian, Bisexual and Transgendered Elderly is an important national resource. SAGE can direct callers to their local gay support systems closest to them.
And last, but certainly not least, here at CancerCare we have a number of support services for LGBT patients, survivors, and caregivers. CancerCare has a fact sheet “Coping with Cancer as an LGBT Person” that can be ordered by calling the our Hopeline at 800-813-4673 or ordered online. We offer free, short-term individual counseling over the phone and in person. We also have two face-to-face support groups running in our New York City office:
- Gay and Bisexual Men With Cancer Support Group, in collaboration with SAGE
- Lesbians, Bisexual Women and Transgender Cancer Survivors Support Group, in collaboration with SAGE and the Lesbian Cancer Initiative
In addition to checking out the above resources, please feel free to call our Hopeline at 800-813-HOPE (4673) to speak with an oncology social worker about helping your LGBT patients and caregivers locate additional support.
I lost my only daughter this past June—she was only 38 years old and left 3 young children. They do not live close to me. Our family’s big summer reunion is coming up in a few months and I don't know how I can be around everybody, at what is supposed to be a happy event, when I feel so sad. I am married, but my husband is going through his own grief. Suggestions?A.
Anniversaries are tough, and it’s not unusual for the looming date on the calendar to start to dominate a bereaved person’s thoughts and feelings. With seasonal events like holidays and family traditions, even just the weather and in this case the long days of summer, it can really feel like it is going to happen again – “it” being the diagnosis, the treatment, the loss, and the feelings that followed. Terrifying!
There’s also a tendency to feel like twelve months is the cutoff point in grieving. It’s been a whole year and you should be “getting over it” by now… In this context, still being sad can feel like failure or defective coping. But the real deal is that everyone has to grieve at their own speed. In working with people who have lost someone to cancer, I’ve begun to understand that the first 12 months are often just about facing the loss and the repercussions of the loss. The second 12 months are often focused on adjusting to the loss and trying to reintegrate oneself back into life without the loved one. There’s no way to rush your process, and no arbitrary point where you should be “back to normal.”
Given that you are still grieving, the upcoming reunion sounds scary and isolating. You mentioned that your husband is going through his own grief. Can you share your fears about the reunion with him? He may be experiencing something similar, in which case there’s the possibility of mutual support. I also suggest seeking out a trusted relative who will be at the event and sharing some of your fears about the reunion. Knowing that a couple of people understand that you are having a tough time, and are willing to support you in that can increase your sense of emotional safety. Regardless, I suggest taking the event at your own pace and building some flexibility into your schedule so that you can take a break if and when you need to.
You may read more in our fact sheet Grieving the Loss of an Adult Child.
I'm an eighth-grade teacher and one of my student's mothers recently died of cancer. I'd like to know how to help her, and how to help the rest of my class support her.A.
Your student’s life probably feels very alien and unsafe right now, so the best thing you can do is let her know that whatever she is feeling is ok (including having feelings that are confusing or volatile or contradictory) and that you understand that.
I would also check in with the school’s psychologist, if there is one, and see what support, if any, he or she has offered the student. After that, I think the biggest thing that you can do is to help all the students face not only what happened (that their classmate’s mother died of cancer) but also what is currently happening in the classroom (that they probably feel like they don’t know what to say or how to say it). Normalize and support that discomfort or sense of danger or failure, both for the student in question and for the rest of the class. That’s going to take a lot of pressure off of everyone, and reduce the sense of failure and isolation as well.
And because her world is probably pretty upside-down, the familiar and predictable setting and structure of the classroom (and keeping it as normal as possible) may be a significant support to the student in and of itself. Maintain normalcy, with an extra dose of availability, and some flexibility as the student’s experience unfolds.
The following are resources to help the school staff as well as the child’s father:
I am a 20-year-old college student and I recently lost two grandparents to cancer. I was close to both and am having trouble dealing with guilt and regret for not being there when they died or spending more time with them. What can I do?A.
I suggest seeing if your school has a counseling center. You mentioned that you are having trouble dealing with the guilt, which is understandable, with two significant losses. That can overwhelm your capacity to cope and make sense of what happened, let alone arrive at a meaning that you can live with. Struggling with that by yourself can increase your sense of powerlessness and isolation.
Guilt and regret are not unusual. And you may have a valid reason for feeling those emotions. My hope is that in working with a counselor, over time you can rediscover other aspects of your relationships with your grandparents that are being overshadowed by the immediacy of the loss, and incorporate those into a comforting narrative that integrates both the loss and the closeness of your relationship with each of them, and the ongoing meaning they, and those relationships, continue to have even in the present.
Thoughts of what you could have or should have done are evidence that you are having a hard time accepting the losses. It’s a little bit like magical thinking, in reverse. If you had only done that one thing, the outcome would have been different, and you wouldn’t be feeling this way. This is normal, and should decrease as you adjust to the new reality. Talking about it with someone who understands can facilitate that adjustment.
CancerCareoffers bereavement support groups, both in-person in our New York City offices, and online. You might also contact your school’s health and wellness center to see if they have any information on local young adult bereavement support groups.
How do you find "joy" in life when faced with your partner's serious cancer treatments, pain, and surgery? I find that I am worried/anxious most of the time.A.
Finding joy in life amidst turmoil is not easy. The biggest question you have to ask yourself is how helpful and supportive are you going to be to your partner if you are not taking care of yourself as well. I think the best analogy I can offer to illustrate this concept is the oxygen mask… flight attendants instruct the passengers as follows: “In the event of an emergency, please put on your oxygen mask before assisting others.” Take time out of your day even if it is five minutes to do something relaxing and enjoyable solely for you. Also, being mindful of the loving and joyous moments you share with your partner, as well as moments for yourself, such as recognizing the beautiful weather, if you have children enjoy the moments with your child(ren), if you have pets be mindful of the solace and satisfaction they bring you.
Anxiety (worry) is a natural feeling when facing a loved one’s cancer diagnosis; it often makes one feel a lack of control, and overwhelmed. Our bodies have what is called a flight or fight response, and when we perceive a threat to our personal well-being, our life, or even a loved one’s life, this mechanism is triggered, in which we choose to engage the threat or flee from it. To engage the threat means to understand the root cause for the perceived threat, and take steps to minimize its effects. There are some steps you can take to minimize anxiety, such as physical activity, deep breathing, or five to ten minutes of progressive muscle relaxation. Moreover, it is also important to understand the nature of the anxiety: are you experiencing physical symptoms related to your anxiety, or are you having negative thoughts or both? When experiencing negative thoughts, ask yourself the following questions: “What is the evidence for this negative thought? Am I looking at both sides of the issue?” Then counter those negative thoughts with three alternative positive, self-supportive statements.
My wife got back her biopsy and has her surgeon visit scheduled for the 22nd. She is 52 and I am so scared I cannot put it into words. I know I need to be strong for her and I am in front of her but I cry for hours when I am alone. I need to find a way to put some of this fear away so I can be the man she needs me to be and help her through this. Any advice?A.
It is a natural reaction to feel scared, especially with a cancer diagnosis. It is admirable that you want to be strong for your wife and give her the support she needs, but what about the support you need? It is helpful to have someone to talk to about your fears, someone who can be objective, someone that you can trust. You may want to join a support group for caregivers or engage in individual counseling or both. CancerCare offers in-person counseling for people in New York City, Long Island, and parts of New Jersey and Connecticut. If you live outside of those areas, we offer short-term telephone counseling to help you cope with the cancer experience. In addition, we also offer support groups in three different modalities: in-person (if you live in New York City, Long Island, New Jersey and Connecticut), telephone support groups and online support groups.
Here are some additional resources that may be helpful to you if you feel you need longer term supportive counseling:
- Help Starts Here, through the National Association of Social Workers offers an online directory of clinical social workers, psychologists, psychiatrists and other licensed professionals. You can search each database for clinicians who have experience in cancer issues.
My mother recently passed away from cancer and people are telling me to join a group. I'm not sure what type, but thought I'd ask to see what is out there. I’m 37. Thanks!A.
The death of a loved one can be one of the most difficult experiences in life. Bereavement can be even harder if you are a young adult (21 to 39 years old). It can make you feel very alone because you might find that none of your peers have gone through anything similar and won’t understand or know what to say. Being with others who have similar experiences and who do understand what you are going through can be vital at this time.
Bereavement support groups can decrease feelings of isolation and loneliness and provide a safe space to process feelings of grief and loss. Group members not only support each other by validating and normalizing their experiences and emotions but they can learn coping skills from each other. The opportunity to share your narrative and be able to grieve openly helps to start the journey to recover.
However, everyone grieves differently and therefore there is not one way to cope with the death of a loved one. Support groups can be very helpful, but might not speak to everyone. If this does not work for you, individual bereavement counseling could be more appropriate during this time.
There are no rules in the recovery of bereavement and only you will know what works for you.
Support groups are available at CancerCare and are led by oncology social workers. View CancerCare’s support groups, which include a Young Adults Who Have Lost a Loved One Online Support Group.
CancerCare also offers publications on bereavement.
And finally, here is additional information about coping with loss.
Recently my dad was diagnosed with cancer, and I've chosen to take on being his primary caregiver. This is a emotional and stressful experience. I am staying at their house 3 hours away from my husband and friends, making it more difficult. Every online support group is geared towards young adult spouses, and I'm one year too old to qualify. Do you know of any support groups online for my situation?A.
Being a primary caregiver can absolutely be an emotional and stressful experience – and in your case, made more difficult by the fact that you are also far from your husband and friends. Joining a support group is a wonderful first step in finding a community of others who “get it.” Being connected with people who understand and who are possibly facing some of the same struggles and questions can be hugely meaningful. I am so glad you’re reaching out for this kind of support and please know that we do offer an online group for you.
Our Online Young Adult Caregiver Support Group would be a great option; the majority of participants are caring for a parent just as you are. While this group and our other young adult groups are usually aimed at people between the ages of 20 and 39, we are flexible. For someone like yourself who is still so close in age and prefers this type of group, we can certainly make it available to you. To join, we do ask that you complete a short online screening to confirm that the group will meet your needs and expectations.
I also want to mention that CancerCare offers short-term telephone counseling provided by licensed oncology social workers. Many of our online group members choose to supplement their group experience with individual counseling. If you are interested in learning more or possibly enrolling, I encourage you to call CancerCare’s Hopeline at 800-813-4673. All the calls are answered by oncology social workers who can get you connect you with support. Our hours are Mondays to Thursdays 9 a.m. -7 p.m. EST and Fridays 9 a.m. -5 p.m.
Can I join an online support group if I live outside of the U.S.?A.
Thank you for your interest in our online support groups, and please be assured that people living outside the United States are very welcome to join any of our online groups. As long as you have an internet connection and are comfortable in an English-language group, you are welcome to join. We do ask that you complete a brief online screening to confirm that our program will meet your needs and expectations, and our screening form does accept international addresses and telephone numbers. For a full listing of groups, please visit www.cancercare.org/support_groups.
For more information about support groups, read our publication “Why Join a Support Group?”.
My uncle has advanced stage cancer and is very weak. He no longer is able to swallow well and has lost weight and strength. What can we do to help him gain some of his strength and weight? I hate to see nothing else is being done by his doctor and home nurse. Will a GI tube be something to consider mentioning?A.
Helping a loved one with cancer to manage symptoms and side effects can help caregivers to feel useful while also providing the patient with much-needed support. That said; I can hear how difficult it must be to witness your uncle facing such challenges, and to feel he is unsupported by his medical providers.
First, I would definitely encourage you to address your concerns with your uncle’s oncologist. While it may feel uncomfortable to broach the conversation about your feelings about the lack of support, you have the right to ask questions and get information. It’s important that your uncle’s weight is a priority as this will likely impact his ability to maintain his strength, both physically and emotionally.
Talking with a nutritionist or dietician on staff at his treatment center may also help you explore alternatives and to consider any foods he still may be able to tolerate and swallow on his own. However, tube feeding or intravenous nutrition can be a more practical way of helping him to get the nutrition he needs if he is unable to swallow on his own enough to get adequate nutrients. Feeding tubes and intravenous nutrition work with prescribed medications, so his oncologist and nurses may be able to educate him about the different options for tube feeding, as well as help him to get accustomed to this new way of feeding.
You may also benefit from exploring these CancerCare fact sheets and podcasts which provide additional information on the importance of nutrition and dealing with weight changes:
- Healthy Eating and Managing Weight Changes During Cancer Treatment
- Weight Changes After Cancer Treatment: Why is it Happening and What Can I Do About It
- Coping With Appetite and Weight Changes
- Coping with Cancer-Related Weight Changes and Muscle Loss
- The Importance of Nutrition During Treatment
In addition, The Oley Foundation works to provide information, education and advocacy surrounding intravenous nutrition tube feeding and may also be a useful resource if this is recommended for your uncle.
Keep in mind that getting support from other patients in a similar situation might also help give your uncle practical tips to manage these side effects, and may help foster a sense of hope and strength. Given his challenges with weakness and swallowing, perhaps an online support group would be a more feasible option. You can learn more about about our online support groups which are completely free, available 24/7, and facilitated by licensed, master’s level oncology social workers. We also provide free individual counseling by phone, and you can reach a social worker by calling 800-813-4673. Know that these services are available to you, too, as you cope with being a caregiver and what this role means to you.
I have coverage for my cancer treatment under the Affordable Care Act and am nervous it could be in jeopardy after President Obama leaves office. Can you provide some information and resources that could help me?A.
With a new, very different administration just a few weeks away, many in our community are worried about their insurance coverage and what this change will mean for the health care landscape.
First, the good news: although the president-elect and Republican leaders have signaled that they would like to repeal the Affordable Care Act (ACA) as early as January or February of 2017, it is unlikely they will be able to repeal certain key aspects of it, such as the ban on denying coverage due to pre-existing conditions. We do not anticipate any changes to the system that will directly affect you in 2017. Republican leaders have indicated a replacement is probably 2-3 years away.
Now, the not-so-good news: many of the changes that have been proposed may have serious consequences for your ability to access affordable, quality health insurance. For example, if the ACA is repealed, insurers would no longer be required to cover the 10 essential health benefits – such as hospitalization, maternity coverage, medications, and mental health services – and could impose annual dollar caps on your benefits. In addition, the ACA currently limits how much you have to pay per year for deductibles, co-insurance and copays, in the form of your “out-of-pocket maximum”. The current maximum for an individual is $7150. In the event of a repeal, there would no limit to the out of pocket costs to consumers. The organization Raising Women’s Voices has created a handy, one-page outline of what is at stake.
At this point, these changes are conjecture, since the new administration has yet to take office. It may be that opposition to these changes will prevent them from happening.
In the meantime, you can contact your elected officials and share your health insurance concerns. To find your elected officials, visit votesmart.org/officials. Social media contact information for current members of Congress can be found on triagecancer.org/congressional-twitter-handles.