Q. Mi esposo tiene cáncer y mis hijos y yo estamos experimentando muchos temores y muchas emociones negativas. ¿Dónde podemos encontrar grupos de apoyo u otro tipo de apoyo emocional?
Cuando un ser querido es diagnosticado con cáncer, esto afecta a toda la familia. El experimentar temores y emociones difíciles es normal. La gama de emociones que se sienten difiere de una persona a otra. Sin embargo, el temor es la emoción más comúnmente asociada con las personas recientemente diagnosticadas y sus familias. El grado del temor varía, así como los detalles de lo que se teme. Los temores más comunes son el miedo a lo desconocido sobre el diagnóstico y tratamiento, y la preocupación acerca de cuál será el pronóstico de la persona.
Los grupos de apoyo son muy importantes durante este tiempo debido a que proporcionan a los cuidadores y los miembros de la familia un lugar seguro donde pueden hablar libremente acerca de sus emociones con otras personas. A menudo, los cuidadores sienten que deben poner una “buena cara” frente a su ser querido diagnosticado. El tener un espacio separado, ya sea en grupo o individualmente, proporciona un tiempo donde las emociones y los miedos pueden ser compartidos y discutidos sin temor alguno.
Si llama a CancerCare al 1-800-813-4673, uno de nuestros trabajadores sociales especializados en oncología puede hablarle sobre los grupos que serian más apropiados para usted y su familia. CancerCare ofrece grupos de apoyo de tres maneras diferentes (cara a cara, por teléfono y en línea) donde usted se puede conectar con otras personas en una situación similar. Todos los grupos de apoyo son gratuitos y dirigidos por nuestros trabajadores sociales que se especializan en ayudar a las personas con cáncer y sus seres queridos.
Para aprender más sobre nuestros grupos de apoyo, llámenos al 1-800-813-4673 o envíe un correo electrónico a firstname.lastname@example.org.
Q. How do I deal with the possibility of infertility due to my cancer treatments?
Facing the possibility of not having your own children can be upsetting and affect your relationships and how you feel about yourself. If at all possible, before you make a decision about your treatment, take time to explore all the options available to you. Here are some other things you can do:
- Speak to your doctor before treatment about how the effects of surgery, chemotherapy drugs, or radiation might affect your ability to conceive and have children. Ask about options to preserve your fertility or alternative ways to treat your cancer.
- Ask your doctor to make a referral to a reproductive specialist. Sperm and embryo cryopreservation are considered standard practice and widely available; other fertility preservation methods (such as ovarian tissue freezing, ovarian suppression or ovarian transposition) should be considered investigational and be performed in centers with the necessary expertise.
- If you are uncertain about your fertility after cancer treatment, you can test your blood levels of FSH (follicle stimulating hormone) to determine your ovarian health.
- You can consider adoption and surrogacy.
The possibility that one cannot have a child, or an additional child, is a loss and, as with other losses, you need time and space to grieve. You may want to speak with a social worker or join a support group to connect with other women who are experiencing similar feelings.
Other helpful organizations include:
Q. 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?
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
- 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 and any potential difficulties with their doctors 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.
Q. When I am no longer covered under my parents' policy, will I be able to get my own health insurance with a past history of cancer?
For young adults, many of whom do not have full-time jobs, getting adequate health insurance coverage is a concern. While each state has different guidelines for coverage, young adults can generally be covered under a parent’s insurance until the age of 25, and most universities and graduate schools offer student health benefits.
If you do not have health insurance, seek out a medical social worker with knowledge of the health insurance plans in your state who can help you understand the specifics of these plans and how to apply. I recommend a few resources:
The National Coalition of Survivorship offers, What Cancer Survivors Need to Know About Health Insurance.
The Georgetown University Health Policy Institute has created consumer guides for getting and keeping insurance for all 50 states.
The cost of cancer treatment and follow up care can be overwhelming at times. Seek out financial assistance programs for which you still may be eligible. Thoroughly review the type and cost of health insurance offered by any prospective employer. And speak with a medical or oncology social worker who can offer practical assistance to help you find adequate health coverage – the first step in your survivorship planning.
Q. 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?
Often times, when young adults are first diagnosed with cancer, they are busy with doctor’s appointments, trying to understand their treatment, and figuring out how all the new demands will fit into their active lives. A support group may not be something people think of initially, but rather an option they come back to when they are better adjusted to their new routine.
Being supportive to your son as he begins treatment may include helping him find the right support group, along with other resources. You can do research for him, provide him with specific group information, and encourage him to talk to the group leader directly about any questions and concerns.
If he is unable to make it to face-to-face support group, he might consider a CancerCare online support group. These groups are accessible 24 hours a day, seven days a week, and led by a professional oncology social worker.
As his mom and caregiver, it’s also important to seek support for yourself. We offer support services for caregivers, including an online support group. If your needs are met, you will undoubtedly be a better support to your son.
Q. 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?
Having cancer in your 20s or 30s can make you feel lonely. Most of the people you probably see in treatment or sitting next to you at the doctor’s office are much older. But you are NOT alone!
Connecting with others your age who are also facing cancer – people who “get it” – can be very helpful as you cope with the many feelings that may come up. Other young adults can also share information on practical concerns such as managing side effects and navigating the health care system.
These organizations specialize in providing support and services to young adults with cancer:
Q. I'm worried that a few side effects from my cancer treatment won't go away. Do you know how long they might last?
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.
Q. I've finished treatment and now I feel like I'm on my own. Are there things I should be doing?
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:
Q. How can a cancer survivor deal with fear of recurrence?
Many feelings can come up once cancer treatment ends. On the one hand, it is a time of hope and relief, but it can also be a time of fear and anxiety. Fear of recurrence is not at all uncommon for cancer survivors and you are not alone. Take control of the things you are able to. Everyone has their own way of coping, but here are a few practical suggestions:
- Take care of yourself by making healhty choices which may include increasing physical activity and adjusting your diet. Engage in activities such as yoga, meditation, or other relaxation techniques.
- Seek out support. Speaking with others in a support group can help relieve anxiety.
- Explore spiritual connections. Read our fact sheet, Strengthening the Spirit.
- Stay active in your follow-up care by asking specific questions.
Questions to ask your doctor about recurrence:
- What is the likelihood that my cancer may return?
- Are there any steps I can take to keep it from returning?
- How can I know if it’s back? Are there things I should I look for?
- What tests will I have that could detect a recurrence? How often should I be tested?
Other resources include:
- CancerCare’s podcast, Finding Hope and Meaning After Treatment
- The National Coalition for Cancer Survivorship’s Cancer Survival Toolbox
Finally, expressing your feelings to a counselor one-on-one in a nurturing environment can be helpful. The process of openly coping with emotions helps many people feel less anxious. You may also join a post-treatment support group to learn how others cope with fear of recurrence.
Q. I'm a cancer survivor and am wondering if I should seek counseling now that my treatment has ended?
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.
Q. Are there books written specifically for children that can help them understand and cope with a parent's cancer diagnosis?
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.
Q. 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?
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.
Q. My 7-year-old daughter is sure she did something to cause my cancer. What can I say to her to convince her otherwise?
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.
Q. 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?
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.
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? 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 think it is “babyish” to be worried about you. 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.” Keep in mind that just because you have cancer, does not change the fact that your son is still a teenager.
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.
Here are some additional tips:
- Let your child know that you are always available to answer their questions
- Try to keep family time consistent
- 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
- Find age-appropriate support groups for your children that will help them feel connected to other children who have a similar experience
Helping your Children Cope with your Cancer, by Peter Vandernoot (Hatherleigh Press, New York), is an excellent resource.
Q. 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?
Talking to your children about your cancer and how it will affect the family isn’t easy, but it is important and necessary. By talking to your children honestly and helping them express their feelings, you can make it easier for them to feel safe and secure.
Here are my suggestions for talking to your children about cancer:
- Use understandable, age-appropriate language. Keep in mind that an eight-year-old will understand cancer differently than a teenager.
- Explain your treatment and any possible changes you may be facing, such as hair loss or being more tired than usual. Reassure them that their needs will be taken care of despite these changes.
- Let your children ask questions and answer them as accurately as possible. If you don’t know the answer, be honest and tell them you will try to find out.
- Let your children know that it’s okay to express their feelings, and who they can turn to for support.
- Write down or practice beforehand what you would like to say to your children; couples may find it helpful to talk to their children together.
- Choose a quiet time when your children are rested to help make the discussion less stressful.
While the discussion of cancer is serious, it is important to use a calm and reassuring voice with children, even if you become sad while talking. You can help them to see how you are trying to cope, which will help them feel okay with their own feelings about cancer.
You’ll find more tips in CancerCare’s fact sheet, Talking to Your Kids About Your Diagnosis.
Q. I am 16 years old. My mother died of cancer when I was 12. I am still grieving deeply about it. What can I do to feel better?
For children and teens who have lost a parent, feelings will be continue to come up as you get older. As a 12 year old, the death of your mother was extremely difficult for many reasons that are personal for you. As you are growing and experiencing different life events such as turning 16, driving, going to high school events, etc., you may experience increased feelings of grief.
There are several things you can do to cope better with the loss of a loved one.
Allow yourself the time and space to grieve. During significant moments in your life, you will feel a range of emotions and intense feelings, and these are typical and are part of the grieving process. Give yourself the opportunity to acknowledge these feelings and work through them at your own pace.
Reach out to supportive people in your life to help you manage through these difficult times. Friends, family, teachers, coaches, school counselors, are all people who may be available when you are in need of support. While some of these people might be better at listening to you, others might be helpful by taking you out to a movie or dinner. Both types of support are equally important. Reaching out to a grief counselor or joining a support group for teens who have lost a parent could also be helpful.
Plan for special days or holidays. Your mother’s birthday, Mother’s Day, and your birthday are all days when you may need additional support. Planning a way to honor your mother on these days may help you in your grieving process.
Here are a few additional resources on coping with loss for you to read:
Q. 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?
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. 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)
Q. 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?
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.
Q. 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?
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.
Q. What support services should a cancer survivor look for after finishing treatment?
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.
Q. 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?
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.
Q. How can I support my cousin who has cancer without saying something stupid or wrong that would upset her more?
I’ve heard many people with cancer say that their job is so much clearer than their loved ones'. A person with cancer is supposed to follow the medical advice for treatment and do what the doctor says. For loved ones, it’s sometimes hard to know how to be helpful.
If you want to give your cousin emotional support but are concerned about broaching a sensitive subject, keep in mind that while it’s upsetting, your cousin knows she has cancer. It is her reality, and it’s okay to acknowledge that. Too often, patients are denied the opportunity to talk about their feelings and fears, either because loved ones don’t want to upset them or are uncomfortable hearing about it themselves. It’s okay to ask your cousin how she is doing, and to let her know you are available to listen if she needs to talk.
If you are unsure what to say to your cousin, read our fact sheet, What Can I Say to a Newly Diagnosed Loved One?. Keep in mind that not every patient wants to discuss his or her feelings, so don’t push too hard. But those who do wish to talk will appreciate your willingness to listen. She may just need to vent, or you may be able to provide some practical information or resources to assist her.
People with cancer who do express their feelings and fears, can also get tired of talking about their illness. Your cousin may appreciate conversation about “lighter” topics, such as favorite movies or T.V. shows, or that great book you or she just finished. While it may seem trivial to talk about these subjects, patients still want and need to feel “normal,” and to have a life that isn’t all about cancer, all the time.
Q. What are support groups and how can they help me? How do I know if they're right for me?
People with cancer and their caregivers sometimes feel that other people, unless they’ve been through it themselves, don’t really understand or “get it.” Or they don’t want to burden their families or friends with their worries: Why do I feel so bad? What will happen to me?
Joining a support group is an opportunity to meet with people who are going through similar experiences and, by expressing your thoughts and feelings and sharing what you’ve learned, to feel less alone. Group members exchange valuable information and tips with one other including where to find reliable medical information, how to communicate better with their doctors, and what useful resources are available.
Support groups are usually led by professionals such as social workers and psychologists, or by trained volunteers. These leaders help the group achieve its goal of providing support to members, and can also help members individually as needed. Groups that are primarily educational in nature are often called “drop in” groups, meaning that members often change from meeting to meeting. Support groups usually require a meeting with the group leader before joining the group to make sure the group is a good fit for the individual. Most support groups run for set periods of time of approximately 8 – 12 weeks. Although the majority of groups meet face-to-face, there are also telephone and online groups available.
Are support groups for everyone? No – some people are too vulnerable to the strong emotions that can be expressed in a group, while others are simply not comfortable expressing themselves in front of other people. But if you’re 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.
And if a support group is not a good fit, you may consider individual counseling.
Q. 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?
To organize a support group where you live, start by researching what groups currently exist. Local medical centers often offer support groups that are open to the community. The American Cancer Society maintains a resource database that lists many local groups. You can reach out to group leaders for guidance and tips. Contact national advocacy organizations for specific cancer diagnoses, such as UsToo for prostate cancer, to find out if they have a chapter where you live.
Practical group details include finding a time and place for your group to meet, publicizing your meetings, and deciding how often to meet. It’s helpful to identify group guidelines and goals, and to think about how you as a leader, will help achieve them.
Questions you need to answer:
- Who can participate in the group (patients, family, friends, professionals)?
- What are the rules for discussion and maintaining privacy?
- Should certain controversial topics (for instance, religion or sexuality) be “off limits”?
- What mechanism will be in place to enforce your group’s guidelines?
Discussing these issues with the group and writing down your decisions can be useful later on for resolving any conflicts. From our years of experience in organizing and running support groups, we have found that answering a few simple questions can help you run an effective, successful group.
I’d also recommend reading The American Brain Tumor Association’s brochure, Organizing and Facilitating a Support Group.
Q. 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?
There are different ways to help support family and friends who are coping with cancer. I’d begin by reading our fact sheet, What Can I Say to a Newly Diagnosed Loved One?.
Here are additional suggestions:
Listen. We want to be optimistic and positive with people with cancer. However, when they express fear or sadness, simply responding that “everything will be fine” can sometimes make them feel that their concerns are not being heard. Listening to it all – the negative thoughts included — helps them to share their most important feelings.
Be specific about the help you can offer. Telling a person with cancer to “Call me if I can help with anything” often puts him or her in a difficult position: Do you really mean anything? When is the right time to ask? It’s better to ask if you can help in a specific way. Perhaps you can research medical information about his or her cancer, or take on necessary tasks like driving him or her to treatment, cooking meals or handling other household chores.
Support your loved one’s treatment decisions. We all have our own opinions, but ultimately it is up to the person with cancer to decide what is best for him or her. Offer your own opinion or advice only when asked, and respect your loved one’s right to decide the course of his or her life in the way that accords with his or her values.
In support groups for caregivers, it’s possible you’ll find a lot more specific information about how and where people have found medical care, tips for managing the side effects of treatment, and suggestions for finding good resources. A caregiver group can also give you a place to talk about the emotional challenges of caring for someone while still caring for yourself. As a caregiver, there may be things that you feel you just can’t share with your loved one, like your own fears and concerns. Sometimes, just knowing that you’re not the only one having difficulty can relieve some of the stress.
Q. What are the different types of online groups I can join?
Just like support groups that meet face-to-face, there are several different kinds of support groups that “meet” in cyberspace:
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 sometimes be high.
Message board – CancerCare offers this type of support group, which features a specific online website, accessible only to members, 24 hours a day, seven days a week, where people can write comments and questions, and read and respond to others members. A message board is 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.
Q. 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?
During adolescence, teens often focus on their bodies and how they compare to their peers. A teen whose physical appearance has been affected as a result of his cancer treatment can often experience complex and complicated feelings about himself.
It is important to acknowledge the impact the cancer has had on your son’s life. Not only did it make him sick, keep him out of school, and separate him from his friends, it also changed his body. In a word, the cancer diagnosis “sucked.” Helping your teen voice this and acknowledging that his situation was unfair can help to normalize the anger and frustration he most likely feels.
Group Loop is an online community designed specifically for teens and can connect him with other teens.
Your son may also need additional support outside of the family, especially if he is displaying behavior which is not typical for him. CancerCare’s oncology social workers can talk with your teen (or you) about his current situation and provide individual counseling and referrals to other professionals in your area who can help.
As a parent, you may also feel overwhelmed and concerned about your teen’s physical changes. Addressing your feelings and the impact your son’s diagnosis has had on you is also very important. We can provide and help you find local support for yourself as well.
Q. I'm looking for support for my teenage son to help him deal with his sister's cancer. Can you recommend any specific places?
For most teenagers, cancer is about the last thing they expect to deal with during a time of life that may already be challenging. Adolescence can often be a struggle over figuring out who you are and what you believe. Teens tend to be focused on their peer relationships and want to “fit in,” and often look to other teens who are similar to them for guidance.
Having a sibling with cancer can make a teen feel different than his or her friends, which can lead to feelings of sadness and loneliness. Teens often struggle to understand what a cancer diagnosis means, how it will affect their own lives, and what will happen to them. Not being able to talk with friends going through something similar might leave them feeling scared and overwhelmed.
Check with a social worker at the hospital or treatment center where your daughter is receiving treatment to find out about any support programs specifically for siblings that might be offered there or by local organizations.
SuperSibs! provides support services, including camps and care packages.
Lastly, I’d suggest reading our booklet, Helping Children When a Family Member Has Cancer.
Q. 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?
Have you told your mom what you told me – that you want to be there for her and help care for your grandmother? Caregivers often feel they need to do everything themselves to make sure things get done as best as possible. This often leaves little room for others to help, and the caregiver ends up exhausted.
Let your mother know that you are concerned and want to support her. Be clear about how you can help. Your mom might reject a general offer of help, but she might let you assist in specific ways, like driving your grandmother to an appointment or doing chores around the house.
If she still resists, ask her to think about how good it makes her feel to do things for her own mom. Then let her know that you would like to experience that good feeling, too, by supporting her. This approach works well with people who are caregivers by nature and have trouble accepting help.
Your mom may feel uncomfortable sharing with you her feelings about her mother’s illness. Still, you can support her emotionally by steering her toward helpful resources, including our publications, Caregiving for Your Loved One With Cancer and Caring Advice for Caregivers: How Can You Help Yourself?. We also offer telephone and online support groups for caregivers, and can help you find support groups in your area.
Additional resources you might find helpful include:
Remind your mom that one of the best things she can do for everyone involved is to take care of herself by eating and sleeping enough, guarding her own health (taking medications, exercising, getting to doctor’s appointments, etc.), and taking time for herself.
Q. I'm starting chemotherapy soon. Should I avoid having sex?
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.
Q. 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?
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.
Q. 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?
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.
Q. Can you suggest some resources that address the effects of mind/body exercises on your immune system?
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.
Q. 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?
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).
Q. 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?
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).
Q. 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?
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.
Q. 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.
Adjusting to the reality of a cancer diagnosis and the changes to your life takes time and energy. It makes sense that you don’t feel like celebrating. You’re probably experiencing many feelings: some negative, such as uncertainty about the future, and also some positive, such as gratitude for the love and support of family and friends. It’s okay to not feel up to celebrating, but you should try as much as you can to not let your fears about being a “downer” keep you from staying connected with the important people in your life. Here are some practical tips that could be helpful to you:
- Keep your expectations realistic. Know your physical limitations and give yourself extra time to rest as needed; anticipate that strong emotions will hit you unexpectedly, and give yourself permission to be less than “joyful” all the time.
- Delegate — let others help! Create a list of tasks you can ask others to take on for you accomplishes two things: it helps distribute responsibilities in a more manageable way, and people feel more comfortable when given something specific to do to help.
- Save your energy for the important stuff. In other words, prioritize and pace yourself. If you need to turn in early, or aren’t able to eat in your accustomed way, just let people know. Everything doesn’t have to be done all at once: enjoy what you can now, and look forward to enjoying more in the future. Maintaining holiday traditions is important, but that doesn’t mean they can’t be altered or replaced with new ones.
- Share your feelings with others. Don’t be afraid to express your feelings and concerns to family and friends. But consider in advance how much you feel comfortable sharing, and how much the other person may be able to hear. These are judgment calls, and not easy to make, but remember that the goal is not so much about imparting information, as it is supporting and enriching relationships.
For additional tips, please read CancerCare’s fact sheet, Coping with Cancer During the Holidays.
Another source of information is available from the American Cancer Society.
Q. 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?
I don’t know how things stand right now with your husband’s treatment and the extent of your caretaking duties, but it may be that you’re feeling “burnt out.” Even though it’s the holiday season, it’s hard to feel like you can take “time off” from cancer. I wonder if your lack of interest in shopping and the trappings of Christmas is a signal that you need to replenish yourself physically, emotionally and spiritually. My suggestions for you are not so different from the ones I gave previously to patients coping with the holidays: Keep expectations realistic; Let others help, even if you’re still the principal organizer of holiday activities; Set priorities and pace yourself; and Share your feelings with others.
Try not to dwell only on the cancer: remember that the meaning of the holidays is in certain ways already expressed through the care you are giving. And although you’re struggling with feelings of sadness and loss, you are still permitted to enjoy the gifts of the present: to celebrate not only a grand religious tradition, but also the moments of joy and gratitude for being with the people you love.
For more general tips on how to support yourself as a caregiver, see the previous feature on caregiving in the Ask CancerCare archive, with links to other resources and publications, or our Fact Sheet, “Caring Advice for Caregivers: How Can You Help Yourself?”
Q. 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.
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:
CancerCares 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).
Q. 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?
It is difficult when we want to be there for our loved ones but can’t. We can feel helpless and “out of the loop.” However, there are ways to help, even from a distance. Here are some useful tips:
Help your parents with medical matters. Make sure your parents communicate regularly with your father’s doctor and that all their questions and concerns are being addressed. Ask your parents to sign a consent form allowing the doctor to share information with you in case you need to intervene on their behalf. If your parents are uncomfortable asking questions, send them a copy of CancerCare’s publications, Communicating With Your Health Care Team and Doctor, Can We Talk?.
Offer to help your parents with practical issues such as paying bills or making calls to their insurance company. Research information on resources and services for people with cancer. Volunteer to be the one to keep family and friends up-to-date on your dad’s condition, so that your parents don’t have to make so many calls and tell the story over and over. If your parents resist this kind of help, let them know that it would help you to help them. They are more likely to accept the assistance if they know it is helping you manage.
Give them emotional support. They will welcome your regular telephone calls and cards that let them know you are thinking of them and share what’s going on in your life. You many also want to suggest that they find additional emotional support through individual counseling or support groups.
Take care of yourself and your own family. People with cancer often worry about the impact their diagnosis has on their loved ones. You can ease your parents' concerns by seeking out the same kind of emotional and practical help you want for them. Having your own life under control and your own family cared for will allow you to better support your parents and their needs.
For more information, the Family Caregiver Alliance offers a Handbook for Long-Distance Caregivers.
Q. 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?
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.
Q. 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?
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.
Q. 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?
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.
Q. 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?
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.
Q. 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.
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.
Q. 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?
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.
Q. 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?
When someone close to you experiences such a loss, this is bound to affect you deeply. You are likely to observe that your friend is not quite herself in the workplace, and that she may be overcome with emotion, filled with sadness, and tearful. These expressions are normal responses to grief. Still, you and other co-workers may feel unsure about what to say or do to comfort and support your friend.
Remember that it is natural for you as her friend, to be struggling with your own reactions to her loss. You may feel that you have to offer her answers to her problems or find a way to help her through her grieving more quickly. It’s important to recognize that there is no magic answer or quick fix. Instead, focus on these few basic guidelines:
- Grief is a process and takes time. Remain patient and available, and be aware that she will have her ups and downs. Reassuring your friend that it’s okay to have ups and downs will help her understand what is normal in grief.
- Listening is often the very best kind of support you can provide. Just be available to her and allow your friend the time and space she needs. She will have sorrow and many other powerful feelings to express. You cannot take these feelings away or “make it all better,” but by listening you can demonstrate that you care and that her feelings matter.
- Extend yourself in practical and specific ways. It can be uncomfortable for a person who is grieving to ask for help, so offering to do specific tasks can be helpful.
For more information on how you can help your friend, please read our fact sheet, How to Help Someone Who Is Grieving.
Q. 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?
Losing grandparents, no matter what age they were when they died, will always make us feel that we just wanted more time to spend with them. The sense that there was more to say to them, more special times to share, and more memories for us to “collect” and treasure for the future may move us to be filled with guilt or regret about not having done enough.
Although guilt can be a common characteristic of normal grief, it should be balanced with the awareness that we really tried to do the best that we could for our loved one given our human limitations.
It is very difficult to lose two grandparents to cancer in such a short amount of time. How does someone grieving two important loved ones cope when the losses are one right after the other? Allow me, if you will, to step into the role of your grandparents and speak to you directly in each of their “voices”:
“As you know, I have always wanted the very best for you. I remember you when you were born, and was so proud of you as I watched you grow up. You were the dream come true for your parents, and the joy of my life in my later years. We spent a lot of wonderful times together, didn’t we?
“The last thing I would want is for you to focus too much on the fact that you may not have been able to be there with me during my last moments. My greatest hope is that, as you live your life, you will hold onto the memories of me, which are deep inside of you.”
This simple role-play exercise may help you to replace the negative thoughts with positive “feedback.” You can also think about your grandparents' most significant qualities, those that you will never forget. Consider that these positive qualities are part of the legacy left to you and everyone else your grandparents cared about.
We offer an online bereavement support group and our social workers can help you find local bereavement services. An additional resource is griefnet.org, which also offers support groups and resources.
Q. 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?
Grief is a process which continues over a period of time, and so many people have been able to find the comfort and direction they need by seeking out individual counseling or by joining a bereavement support group. People often express that they understood more about the nature of grief, were more accepting of their feelings, and felt less isolated when they participated in counseling or in a support group.
Here are some benefits of participating in a support group:
- You will connect with other members of the group who have a shared difficult life experience, the loss of a loved one.
- Sharing a loss helps create a bond of trust among members and allows a support system to naturally develop over time as the group holds regular meetings.
- Members encourage one another to express powerful feelings which normally emerge during loss: sadness, anger, frustration, and longing for the loved one, as well as hope for the future.
- Members exchange information about the grief process such as articles, books, and websites, and what has been helpful for them.
- Often, the group may decide to devote a special meeting to sharing pictures of their loved ones with each other. This experience can be a way of honoring the legacy of those who have died.
- Members support each other as they anticipate and experience days that may be especially challenging, such as birthdays, anniversaries, and the holidays.
It is important to remember that, as a group member, you are encouraged to share as much or as little as you wish. A group can give you the strength you need to carry on through the daily ups and downs that are part of grief and provide you with invaluable ideas to help you care for yourself.
Q. 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?
I’m sorry to hear about the loss of your husband. In the process of grief, five months is really not a long time, although many people who are grieving expect to feel better sooner and cannot understand why they are still struggling with such intense feelings. Most people who are grieving express that they have some good days along with difficult days. Be gentle with yourself as you experience these normal feelings that are a part of grief.
It is important to remember that the grieving process does take time and cannot be rushed. Although it may feel very upsetting, it is normal to have emotional ups and downs. You are experiencing your world without the physical and emotional presence of your loved one and planning for your own future.
I suggest seeking out supportive services to help you better understand the process of grief and to connect to others who understand what you are feeling. You may benefit from individual counseling, participating in a support group, or reading more about grief and what to expect.
I also recommend the book, How to Go On Living When Someone You Love Dies, by Therese Rando (Bantam Publishers).
Remember, it is a normal and positive step to reach out for help and support during your grief.
Q. 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?
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, Chemotherapy Related Memory and Thinking Changes, and most importantly be kind to yourself.
Q. I have a full-time job. How will side effects from my chemotherapy affect my ability to work?
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:
Q. I'm worried about how the side effects from my treatment will interfere with the holidays. Any suggestions?
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 about managing treatment side effects through the National Cancer Institute.
CancerCare’s social workers are here to help you with emotional support and practical help. Call 1-800-813-HOPE (4673) or email email@example.com.
Q. My aunt is on morphine and acetaminophen for advanced cancer. What else can we do to ease her pain?
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.
Q. My mother has been struggling with pain since she was diagnosed with cancer. What can she do?
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:
Q. I'm receiving chemotherapy and have been gaining weight. Is that normal?
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.
Q. 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.
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).
Q. I'm worried about taking pain medications. Could I become addicted?
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.
Q. How do I talk to my doctor about the pain I am experiencing?
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.
Q. 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.
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:
Q. 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?
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.
Q. 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?
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.
Q. What is "compassionate use"?
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):
Q. 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?
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.
Q. 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?
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?
Q. I've just been diagnosed with cancer. How can I get information to help me make treatment decisions?
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:
Q. Where can I find a simple explanation of medical terms?
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.
Q. My cousin has advanced cancer. Is there a clinical trial she can get into? How do we find out?
Since clinical trials have eligibility criteria, which are specific guidelines that determine who may or may not enter a clinical trial, a good place to begin would be to have a discussion with your cousin’s doctor. It is important to know certain details about her diagnosis and, if she has already received treatment, knowledge about her treatment history is also important. Her doctor may be able to assist your cousin in finding a clinical trial that is appropriate for her.
Information about cancer clinical trials is available from the National Cancer Institute’s (NCI) Cancer Information Service (CIS). Information Specialists at the CIS use Physician Data Query (PDQ), a comprehensive database, to identify and provide detailed information about specific clinical trials. PDQ includes all NCI-funded clinical trials and some studies conducted by independent investigators at hospitals and medical centers in the United States and Europe. To speak with an Information Specialist and have a tailored search performed for your cousin, call 1-800-4CANCER (1-800-422-6237).
You may also search for clinical trials through the NCI’s website. The NCI offers a useful guide, How to Find a Cancer Treatment Trial: A 10-Step Guide. This resource can help cancer patients gather the information needed to search for a cancer treatment clinical trial, identify sources that list clinical trials, learn about clinical trials that may be of potential benefit, and ask questions that will help them decide whether or not to participate in a particular trial.
The National Institute of Health’s (NIH) website, ClinicalTrials.gov, lists clinical trials sponsored by the NIH, other Federal agencies, and the pharmaceutical industry for a wide range of diseases, including cancer. You may also wish to contact the National Institutes of Health’s (NIH’s) Clinical Center, a U.S. Government facility located in Bethesda, Maryland, that treats patients in clinical research trials. To learn more about this center, read Cancer Clinical Trials at the National Institutes of Health Clinical Center: Questions and Answers.
Q. Are there clinical trials for cancer treatments other than chemotherapy?
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).
Q. 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 distinction needs to be made between a referral to palliative care and a referral to a pain specialist. It is important to remember that a palliative care program uses a team approach, usually consisting of palliative care-specialist physicians, nurses and social workers. Other disciplines that may be part of a palliative care team are nurse practitioners, physician assistants, psychiatrists, psychologists, nutritionists and case managers. The medical staff of the palliative care team are trained, and often licensed, in assessing and treating physical pain throughout the course of illness. At this point in time, receiving palliative care is not contingent on insurance and the palliative medical team cannot bill insurance for the services.
There are some hospital and clinics that have separate pain management specialists who are not part of or associated with palliative care. As with the palliative care medical team, these are also specialists who have been trained and licensed in pain management. Often these pain specialists are anesthesiologists if they are physicians or nurse anesthetists if they are nurses. These specialists can, for the most part, bill for their pain management expertise.
Some hospital-based palliative care programs are now joined with pain programs. The result is a singular program referred to as “Pain and Palliative Care”. The combining of these two programs into one program accomplishes a few things. It allows the palliative care team to utilize their pain management expertise in a broader patient population and gives them the opportunity to bill for their pain management services, thus subsidizing the palliative care program.
Your father might have received a referral to either an individual pain specialist or a Pain and Palliative Care program. Either way, it is important that your father follow-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. As for his resistance, it might be helpful for you to explain that pain management is an important part of his overall treatment program. You can also explore his concerns and provide information that might help clarify. For more information, please read our publications:
Q. I am going through treatment and need help covering the costs of practical things, like nutritional drinks and medical supplies. Are there resources available?
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. For example, Abbott, the maker of the nutritional drink Ensure, has a patient assistance program. Abbott also provides more information about insurance coverage of nutritional supplies.
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.
Q. 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?
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.
Q. What is the difference between hospice and palliative care?
The goal of hospice care is to provide pain and symptom management, while also focusing on the person’s quality of life. The hospice team includes physicians, nurses, social workers, pastoral counselors, home attendants and volunteers and they explore the medical, emotional, spiritual and psychological impact of illness and possible death with the patient as well as his/her loved ones. The team also provides continued supportive services to the family in the form of grief and bereavement counseling when needed. The majority of hospice care in the United States is provided in the home, and services are also available in nursing homes, hospitals and private hospice facilities.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Sounds a lot like hospice, doesn’t it? So then, what is the difference?
The difference has to do with the medical definition of chronic vs. end-stage illness and the insurance benefits structure. For a patient to be referred to hospice and receive Medicare, Medicaid or private insurance hospice benefits, a doctor must attest that, in their best estimation, a patient has 6 months or less to live. Palliative care referrals have no such requirement. A patient who has a life threatening illness, however not considered to be within that 6 month life expectancy window, can now be referred for palliative care. So, as with hospice care, the focus with a palliative care referral is symptom and pain management. Thus, all hospice care is palliative but not all palliative care is hospice care.
Finally, hospice and palliative care is now a medical and boarded specialty, requiring physicians to pass a licensing exam in order to be considered a Hospice/Palliative care doctor.
For more information on hospice and palliative care, please visit the following websites:
Q. 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?
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.
Q. How do I find groups to connect with others who may be experiencing similar issues or side effects from cancer treatment?
Connecting to others in a support group, whether face-to-face, by telephone or online, is an excellent way to find support, resources, information from people who’ve “been there”. If you call us at 1-800-813-HOPE (4673), one of our professional oncology social workers can help you by researching groups for you. He or she can let you know about groups offered by CancerCare, and those offered by other organizations as well. You can also learn more about our online support groups.
Another option is to contact a cancer-specific organization (e.g., Lung Cancer Alliance, Leukemia and Lymphoma Society) for group information, as these organizations usually have local chapters that provide support groups. In addition, many of these organizations offer “buddy” programs, which bring people together for mutual support.
Additional resources for finding a group include:
The American Cancer Society maintains a database of local support group information.
The Association of Cancer Online Resources (ACOR) host “mailing lists” which are groups that exist through email.
Q. I was just diagnosed with cancer and plan to continue working. Do I have to tell my employer that I have cancer?
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.
Q. I've heard so much about health care reform (Affordable Care Act), but I'm not sure exactly how I will be affected?
Many of the prominent provisions of The Patient Protection and Affordable Care Act will not take effect until January 1, 2014. However, significant changes occurred in 2010 and 2011. Here’s a summary with highlights:
- People with pre-existing conditions who have been uninsured for 6 months or more are able to purchase insurance coverage through the Pre-Existing Condition Insurance Plan. Some people may also be eligible for subsidized premiums.
- Existing insurance plans are barred from imposing lifetime limits on coverage. Annual limits on coverage will end in January 2014.
- Insurers are prevented from canceling coverage retroactively (for example, if the policy holder gets sick).
- Insurers are allowed to exclude coverage of pre-existing medical conditions for children under age 19.
- Dependent children are able to remain on their parents' health insurance until the age of 26.
- Medicare recipients who are in the Part D “doughnut hole” receive a $250 rebate.
- All new insurance policies must cover certain preventive screenings, such as breast, cervical, and colorectal cancer screenings, as well as flu shots and immunizations, without charging a deductible, co-pay or co-insurance. *Please note that diagnostic screenings are not covered under this provision.
- Generics are approved within 12 years of patent.
- More funding is available to compare the effectiveness of medical treatments.
- A new division, the Federal Coordinated Health Care Office, improves coordination of care for those who receive both Medicare and Medicaid.
- Medicare recipients who are in the Part D “doughnut hole” receive a reduction in cost of 50% on brand-name drugs.
- Certain types of preventive care are available to Medicare and Medicaid recipients at no cost.
Looking forward to 2014:
- Insurers will not be able to refuse coverage to anyone with a pre-existing condition.
- State-run insurance “exchanges” will offer insurance policies to people who don’t get their coverage through an employer or a government- subsidized program. Those who buy insurance through an exchange and have low-to-moderate incomes will be eligible for subsidies to pay for their premiums.
- More people will be eligible for Medicaid.
- Most (but not all) people will be mandated to have coverage, and a penalty will apply if you don’t.
- All new plans must offer an essential benefits package, including coverage for hospitalization, doctor visits, laboratory services, and medications, with limits on your out-of pocket costs.
Other comprehensive sources of information include The Kaiser Family Foundation and The Medicare Rights Center. Healthcare.gov is the federal government’s consumer-friendly website providing more details on health care reform, as well as current and future coverage options.
Q. 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.
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 review this list of questions to ask before you join a Medicare Advantage plan.
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.
Q. 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.
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.
Q. 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?
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.
Q. 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?
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 3 main ways to get health insurance:
- Through an employer, union, professional association or other job-related source. If you have a job and your employer 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. If you are self-employed, see if there is a professional association in your state that offers group coverage at discounted rates. If you are a small business owner, check with your local Chamber of Commerce.
- Buy it on your own.Compare plans and prices by speaking with an insurance broker or visiting an online broker like www.ehealthinsurance.com. Please note that your rights as a consumer are different in every state: in most states, insurance companies can refuse to sell you insurance based on your age, gender, or medical history (but not in New York, New Jersey, Massachusetts, Maine, Vermont, and, with limitations, Washington); in all states they can exclude pre-existing conditions from coverage for a period of time (however, there might still be circumstances in which you would be eligible for coverage). You may also be protected by a law such as HIPAA. Before you buy anything, please visit The Kaiser Family Foundation for information on your rights.
- State and federal health care programs. You may be eligible for health care based on your age, income, or pre-existing disability. To see what programs are available in your state, visit The Foundation for Health Coverage Education.
If you are unable to buy insurance and are ineligible for public programs, you have 2 main options:
- Pre-Existing Condition Insurance Plan. Those who have been uninsured for 6 months or more and have been denied coverage can receive insurance through the Pre-Existing Condition Insurance Program. Pre-existing conditions are covered upon enrollment, and premiums are capped at the average cost of private policies in your area. The federal government will operate the Pre-Existing Condition Insurance Program in those states who choose not to create their own program. In 2014, insurers will no longer be able to deny anyone coverage and this program will end.
- Hospitals and clinics. 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.
Q. I receive Social Security Disability and Long-Term Disability. My doctor filled out my yearly forms to send to my insurance and said I was good to go back to work without discussing how I’m feeling. Now my insurance is sending me paperwork to go back to work and I don’t feel I am ready.
You should comply with the documentation requested by your insurance company, and should review any appeals policy available. However, you should also contact your doctor to discuss your medical condition and feelings about returning to work.
Please note that your eligibility for Social Security disability benefits is not affected by any decision made by any private insurance you may have. However, Social Security is required by law to review the medical condition of all people receiving disability benefits from time to time to make sure they continue to be disabled. Generally, if your health has not improved, or if your disability still keeps you from working, you will continue to receive your benefits. To better understand this process, you should read the publications, How We Decide If You Are Still Disabled and What You Need To Know: Reviewing Your Disability.
Q. I am a 9 year metastatic cancer patient who does not have 40 consecutive work quarters to qualify/apply for SSD. My husband is 8 yrs older (age 68) and still working to provide me with reasonable medical insurance. His job is in jeopardy. If forced to retire how soon could I get medical benefits? I need to know how many years I would be paying for COBRA and HIPPA (afterwards). I also realize that after 2014 “pre-existing condition” may change for someone like me who can’t get medical insurance on my own.
To be eligible for Medicare you must be age 65 or older, or have been a Social Security disability beneficiary for 24 months. Most people 65 or older are eligible for Medicare based on their own–or their spouse’s– employment. Based on the information you provided, you do not have enough Social Security credits on your own work record to qualify for Medicare (40 credits – 10 years of work in a job covered by Social Security). You will only qualify for Medicare coverage on your husband’s record when you are 65. Medicare coverage cannot be denied because of a pre-existing condition.
Since your husband is over age 65, he may already have Part A (Hospital Insurance) and/or Part B (Medical Insurance). Part A is provided at no additional cost. Anyone who is eligible for free Medicare hospital insurance (Part A) can enroll in Medicare medical insurance (Part B) by paying a monthly premium. If your husband loses his job (and medical coverage) he should contact Social Security at 1-800-772-1213 or by visiting his local office within 8 months to determine if he needs to file for any Part of Medicare, regardless of whether he has COBRA coverage.
COBRA coverage is available in most cases for only 18 months, but your husband should check with his insurance carrier to determine how COBRA works, who is covered, its costs, etc. To get personalized help in making coverage decisions you can call your State Health Insurance Assistance Program (SHIP). Contact Medicare at 1-800-MEDICARE (1-800-633-4227) or the Medicare website for the telephone number or additional information.
Q. How do I find information about a particular doctor or hospital? How do locate a specialist?
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.
Q. 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?
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.
Q. My co-worker told me she has cancer. I don't know what to talk about or what to say to her.
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.
Q. 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.
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.
Q. 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?
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.
Q. 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?
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.
Q. 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.
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 register for our upcoming Connect Education Workshop, Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally.
Q. 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?
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 upcoming workshop (June 14, 2011) that you can register for on our website.
Q. 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?
Being diagnosed with cancer not only affects a cancer patient but the family members as well, especially children. Oftentimes, children are overwhelmed with worries about the cancer patient, and can feel alone and different from their peers.
We’re glad you decided to seek support for your 13-year-old, especially since most children do not know there is help available to them. Let your child know that they can always come to you to talk about their worries. They can also talk to another adult such as a teacher, counselor, or a relative who they can trust and who knows about your diagnosis.
Some children may also benefit from connecting with other children affected by cancer by joining an online or in-person support group. Having such an opportunity allows them to relate to one another and feel less alone or different.
You can contact CancerCare at 1-800-813-HOPE (4673), and our oncology social workers can help you find support programs that may assist your child. I’d also recommend contacting a local hospital social worker or patient navigator for referrals to local organizations that offer in-person support groups for teens.
The American Cancer Society (1-800-227-2345) may also provide a listing of local organizations that provide support groups.
Sometimes children may be shy and not feel comfortable about meeting others in person. If this is something your child may experience, they may sign up for an online support group offered through online organizations, such as
Q. 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?
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).
Q. My husband has advanced cancer, and he has severe pain in his lower back and legs. What does that mean?
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:
Q. My pain seems to be increasing. How do I tell my doctor without sounding like a "seeker"?
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.
Q. 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?
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 dietician: 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.
Q. I finished treatment and would like information on fertility issues and cancer survivors. Can you help me?
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 a comprehensive document on the main causes and options for cancer-related infertility. 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 still 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 has a program called Fertile Hope, which provides information on fertility options at all stages of cancer treatment to help you make an informed decision based on your individual needs. Fertile Hope can also provide financial assistance to help you preserve your fertility before cancer treatment begins. You can also search a comprehensive guide of agencies that deal with the financial, practical, legal, and emotional aspects of infertility.
My Oncofertility has a helpful chart that details options for fertility both before and after cancer treatment, as well as comparisons of cost, time, and success rates of the different procedures.
Because of the practical, financial, and emotional toll of fertitlity issues, please consider joining a support community or seeking counseling. CancerCare has face-to-face, telephone, and online support to help you cope with this stress and other survivorship-related concerns.
Q. I am a 4 year survivor of prostate cancer, my sister just lost her 11-month ordeal with pancreatic cancer. She was told she had cancer almost 20 years after losing our mother, so holidays are rough for me and the rest of the family. Any thoughts as to how to handle this?
I am very sorry for the recent loss of your sister and the trying times that you and your family now face, especially as the holidays approach. Likely, there is a “legacy of loss” that has become part of your family’s experience during this time of year, which may add to the grief you are now experiencing. The struggle to try to maintain some degree of normalcy during a very confusing and difficult time is profound, and I’m glad you are reaching out for guidance.
I want to assure you that it is possible to get through this time in a way that feels “right” for you individually and also as a family. There are no rules here; listening to yourselves and acknowledging your limits will be very important as you approach the weeks ahead. Consider each commitment you make and ask yourself honestly, “Is this something I can realistically take on right now?” You are carrying a heavy load and taking time to pay attention to your feelings will help you to make choices that will honor your grief and spend time together as a family.
This time can also be an opportunity for you to come together as a family in very meaningful ways. Perhaps you will decide to avoid the holiday pressures, and instead simply spend your time in each other’s company. It will be important to open up a dialogue with your family about their feelings, thoughts, and ideas as to how they would like to spend the holidays while remembering your mother and sister. Be honest and gentle with yourselves and with each other—this will help to facilitate communication and understanding and find the right balance.
For more information that might be helpful, please view Memorial Sloan Kettering Cancer Center’s video, Coping With Grief During the Holidays.
Please know that you are not alone and if you or any of your family members would like some additional support, please call our Hopeline at 800-813-4673. Our Hopeline is answered by CancerCare professional oncology social workers who are here to help and guide you. I hope you and your family will find some comfort during this difficult time.
Q. I lost my only daughter this past Jan. 2011—she was only 38 years old and left 3 young children. They do not live close to me. Christmas is coming up and I don't know how to get through all the joy of others. I do not want to be a downer to my other family members. I am married, but my husband is going through his own grief. Suggestions?
I am so very sorry for the loss of your only daughter, and at such a young age. Your grief, especially as you face the one year anniversary of your daughter’s death, is understandably intense right now and needs proper attention and care.
You are not a “downer”—you are experiencing grief and that is real. This is a time for you to do whatever you can to take care of yourself. If you feel like crying, pardon yourself, and go have a good cry. Take the time and space you need to feel whatever comes your way and as much you are able, protect yourself from those who might place unrealistic expectations on you or judge you. Trying to force yourself to be happy might cause you additional stress, so try not to do anything you are not comfortable with; remember to pay attention to your feelings and internal reactions, and be gentle with yourself right now.
In order to take good care of yourself, consider identifying trusted friends and family to share your concerns with. If there is anyone you can confide in, call upon them to become your “shepherd” in helping to guide and support you during this difficult time. You might also come up with a “script” or something that you can say that feels authentic when people ask how you are doing, such as “this is a difficult time, but thank you for asking.” Making room for your grief during the holiday season may help you to feel less pressure, and hopefully allow for moments of peace, solace, or even joy that may come your way as you remember your daughter and spend time with your loved ones.
If you would like some additional support, please do not hesitate to call our Hopeline at 800-813-4673. You can speak with a CancerCare oncology social worker who can provide support, guidance, and resources.
Q. 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?
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.
Q. I'm a third-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.
When a child loses a parent, it is natural for those around them to want to take away the pain or say something that will fix it. It is important to remember that you do not need to have all the answers. What your student needs most is to know there is someone there to listen and support her. For the most part, you will want to continue to provide structure and guidance in the same way you did before her mother’s death. Children, even those who are grieving, do best when adhering to their routine and what is familiar to them.
If you have the chance to speak with her privately, you can let her know that you are available if she ever wants to talk. This does not mean you need to take on the responsibilities of a counselor; rather you can be the starting point for her to get additional support. If your school has a counselor, you can help by introducing your student to him/her. Let your student know that if there is ever a time where she feels it is too difficult to be in class she can signal to you and leave to go to the counselor’s office.
As a class, many of the students may have some experience with death, maybe the death of a pet or a grandparent. Most will not have experienced the loss of a parent. The children in your class can be supportive of your student in very concrete ways by making a sympathy card, putting a care package together, and doing other kind gestures.
The following are resources to help the school staff as well as the child’s father:
Q. I've heard recently about this condition - what is neuropathy?
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.
Q. I stopped cancer treatment some time ago and am still struggling with neuropathy. How long does neuropathy usually last? What treatments might I pursue?
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.
Q. Any tips for dealing with neuropathy in cold weather?
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.
Q. I'm having several lymph nodes removed from under the arm—what can I expect?
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.
Q. My father has been diagnosed with cancer and does not have insurance. He is a vet—how do I get him treatment?
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.
Q. 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.
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:
Q. 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?
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.
Q. How can I help my 75-year-old mother organize the different pills she takes for her cancer and other numerous health problems?
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).
Q. I can't afford to pay for my cancer medication. Is there help to pay for them?
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.
Q. 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?
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.
Q. 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?
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.
Q. 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?
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)
Q. 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.
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, CancerCare offers 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.
Q. 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?
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.
Q. 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?
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.
Q. 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.
“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.
Q. 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?
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.
Q. I've been on chemotherapy and have noticed a blurriness that comes and goes. Could the chemo be the culprit?
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.
Q. I'm thinking of getting a second opinion. How should I approach this? Do I tell my doctor?
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).
Q. 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?
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.