For Any Cancer Diagnosis
I'm worried that a few side effects from my cancer treatment won't go away. Do you know how long they might last?A.
Experiencing lingering side effects after cancer treatment is over is common. These side effects can be especially frustrating when you expect to feel better as soon as treatment is over. Most side effects gradually lessen with time as your body recovers from treatment. Share your concerns and questions about continuing side effects with your medical team and what can be done to address them. I’d recommend keeping a detailed daily log of the side effects you are experiencing—this makes it easier to report details to your doctor. Our Connect® Education Workshop, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit can help you prepare for your appointments.
Connecting with others in a support group for people who are post-treatment can be helpful. A support group is a place to share tips and ways of coping with other survivors who might be experiencing similar lingering side effects. We offer support groups over the telephone, online and in person (New York City area). You can also speak with a social worker who will locate groups in your area.
Finally, read our publications to learn ways to cope with side effects.
I've finished treatment and now I feel like I'm on my own. Are there things I should be doing?A.
Finishing cancer treatment often brings mixed feelings. A sense of relief and feelings of accomplishment are normal; so, too, is uncertainty about the future. Your instinct to prepare in some way for your survivorship is a good one. Here are some steps you can take to keep both your mind and your body healthy as you continue to work with your medical team.
Ask your doctor for a Treatment Summary. This should include:
- Your type(s) of cancer with the date and stage at diagnosis
- Types of treatment received (surgery, chemotherapy drugs, radiation doses and tests performed)
- Complications experienced (side effects, transfusions, hospitalizations)
- Other services used (physical therapy, acupuncture, herbal)
Discuss with your doctor what your Follow-Up Plan will be. This should include:
- Future schedule of visits (time and date)
- Who will deliver follow-up care (and where)
- Tests that will be done and why (surveillance and preventative)
- Assessment and treatment for long- or late-term effects (e.g., lymphedema, depression, pain)
- Evaluation of current health behaviors and promotion of healthy life style
There are great resources available that can help you organize all of the above information. The Lance Armstrong Foundation (LAF) has developed worksheets and a Survivorship Notebook. The National Coalition for Cancer Survivorship (NCCS) provides information about Living Beyond Cancer. And for childhood cancer survivors, the National Children’s Cancer Society offers information in managing long-term effects from treatment.
You mentioned feeling “on your own” now that your treatment is complete. This is a common feeling when treatment ends, and it’s good to know about the different types of support available to you:
- Professional support provides you with information, resources and counseling
- Peer-to-Peer support reduces your sense of isolation and helps you connect with others who share similar concerns
Finally, you might find it useful to listen to these Connect® Education Workshops:
I've been trying to get back to normal after ending treatment, but I'm having some trouble. Everyone is happy that I'm back to work, but I'm not sure I am. Why am I feeling this way and what should I do?A.
With the end of treatment often comes the expectation that it’s time for celebration, and for things to go back to how they used to be. Yet, it’s common for many people to feel lost, uncertain and confused about how to move forward. Friends and family usually mean well, but they might not be fully aware of the feelings that can surface after treatment is over.
Often times after treatment ends, people find themselves reevaluating their lives. This could mean reassessing relationships or professional goals, and discovering new ways of finding meaning and fulfillment. Moreover, you might not be fully ready to be back to work, whether emotionally or physically.
Newly diagnosed patients can be so busy learning about their diagnosis, working with their medical team, and going through treatment, that the emotional impact of the diagnosis is not fully felt until treatment has ended. Understanding what life after cancer means to you can take time. This process may involve reflecting on what you’ve been through, identifying changes you might want to make in your life and recognizing what you’ve learned about yourself.
Remember that support groups are not only for people in active treatment. You might find the feelings you’re having right now are better understood by people who’ve “been there” and are currently facing similar issues such as fear of recurrence, living with uncertainty, lingering side effects, and going back to work. You might also find individual counseling helpful.
If you have concerns about how your feelings, both emotional and physical, are affecting your daily life, speak with your doctor or a counselor for support and additional guidance.
What are the different types of online groups I can join?A.
Just like support groups that meet face-to-face, there are several different kinds of support groups that “meet” 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.
I'd like more information about how to help a close friend being treated for cancer. I'm also wondering if a support group could help me too?A.
One of the most powerful ways to help support a friend with cancer is to be emotionally available. Providing a listening ear and an openness to talk about even the most difficult of topics can provide your friend with a real sense of comfort and give them a safe place to share whatever is on his or her mind. Know that you don’t always have to know exactly what to say; simply being present and supportive goes a long way.
Offering specific tasks may help your friend to know exactly what you can provide and when. Caregivers can be helpful in day-to-day chores like laundry and transportation, and can also help coordinate medical appointments, get to know the medical team and advocate for their loved one’s needs both health-related and otherwise. CancerCare’s publication Caregiving for Your Loved One With Cancer offers more information about how to be helpful.
Many caregivers find that support groups are helpful as they give you a space to process your own feelings and get support and insight from others who can relate. Support groups often provide practical tips on managing the tasks of caregiving, help in finding balance between caring for yourself and a loved one, and can provide a powerful level of camaraderie. Seeking support by connecting with a support group or counseling can be a healthy outlet that many caregivers appreciate and learn from. CancerCare offers free counseling and support groups for caregivers.
My dad was diagnosed with cancer last month. He and my mother live in another state, and I have a family of my own so I can't be there to help them out on a daily basis. What can I do to support them from far away?A.
Being a “long distance” caregiver is a unique experience that can be especially challenging. Working to find balance between your own needs and the needs of a loved one with cancer can feel overwhelming for anyone in the caregiver role. But remember, there are many ways you can be supportive and involved in your loved one’s care regardless of the distance between you.
Offering emotional support is one of the most helpful things that you can do for your loved one. Simply checking in and letting your dad know that you are thinking him can go a long way; call, email, Skype, send a card or visit when you can. Those reminders not only show that you care, but may also leave you feeling more connected.
You can also help your parents with day-to-day tasks like managing bills, paperwork and getting organized. Similarly, you can help them navigate the medical system. Dealing with insurance companies, remembering doctors’ appointments and accessing resources can be overwhelming. You can help your family with this by taking on some of the responsibility, communicating with their doctors and nurses, and staying informed. This can alleviate some of the practical challenges for them, while keeping you in the loop.
There are also programs such as My Cancer Circle which exist to help caregivers easily enlist additional support. This online forum creates a sense of community that helps the caregiver, but also ensures that their loved ones needs are met. Family, friends and community members are often looking for ways to help: My Cancer Circle allows them to sign up for specific tasks, like cooking meals or providing transportation, which can help them feel useful and give you some respite and comfort in knowing that these needs are covered.
And lastly, it’s important that you take good care of yourself and your family. Know that there is support available to you, too. CancerCare offers free counseling and support groups that specifically address the needs of caregivers. We offer those supportive services in person, over the phone and online. These services can help you to take care of yourself and your needs, and put you in touch with other caregivers who can relate. This support can be a comforting and powerful experience, so please call us at 800-813-4673 for more information.
I am 28 years old and it seems like I'm the only one my age with cancer. Is there anyone else like me out there?A.
Hearing that you have been diagnosed with cancer as a young adult can be overwhelming and isolating, however you are not alone in this. The answer to your question is yes, there are other people out there like you. There are several organizations that can help you connect with other people your age who have been diagnosed with cancer. At CancerCare, we offer services for young adults who have been diagnosed with cancer through individual counseling, either face-to-face or by phone. We also offer a Young Adult Patient Support Group for anyone between the ages of 20 to 39 who is located in the New York City area.
These organizations specialize in providing support and services to young adults with cancer and might be helpful as well:
My 24-year-old son was recently diagnosed with cancer and I think it would be a good idea for him to join a support group. How do I convince him?A.
As a caregiver, you may feel that your son should join a support group to help him navigate the challenges he may face in regards to his diagnosis and treatment. The difficult part of all of this is that your son must be able to make that decision on his own. As a young adult facing cancer, he may need to understand what his cancer diagnosis and treatment will look like before he is able to give and get support from a group. Managing doctor’s appointments and scheduling treatments can be taxing, however addressing the benefits he may find in a support group is the first step in educating him about how a support group can help.
Support groups can offer a network of comfort and encouragement, a place of unbiased support and an environment that a young adult does not have to explain what he or she is going through because the other group members will understand. CancerCare offers a face-to-face Young Adult Patient Support Group for anyone located in the New York City area. In addition, we offer several patient online support groups. Your son may also want to reach out to Stupid Cancer, an organization that addresses several young adult cancer issues through advocacy, support and more.
As a caregiver, you may want to look into services for yourself. You can contact CancerCare’s Hopeline at 800-813-HOPE (4673) to learn more about our services for caregivers. In addition, you may find some of our publications helpful in navigating your new role as a caregiver.
What are support groups and how can they help me? How do I know if they're right for me?A.
A cancer diagnosis can be very isolating. Regardless of whether you are a patient or a caregiver, you can be immersed in reacting and adjusting to various aspects of the disease. The responsibility to find, manage and pay for care can be hugely overwhelming. It’s hard to feel hopeful, or have any sense of confidence in your ability to cope or make appropriate decisions, if you are feeling small and powerless and very much alone in the experience.
That’s where a support group can be helpful. It provides a chance to meet and interact with other people who can understand your experience. While friends and family members might be uncomfortable, maybe feeling useless or scared, not knowing what to say or do, the members of the support group, with the guidance of a trained moderator, can be there with you in your process.
In addition to lessoning one’s sense of isolation, support groups can be a source of valuable information. Not surprisingly, members find that sharing resources and coping skills can be highly rewarding, whether on the giving or the receiving end of the transaction. Topics often include where to find reliable medical information, how to communicate with doctors, challenges of treatment and coping techniques. Much of one’s experience in a support group depends on the chemistry of who is in the group and how it is moderated. One thing common to most groups is the potential for strong emotional expression, which can be uncomfortable for some people. Other factors to consider are how you feel sharing things about yourself in a group of people, and whether or not you can meet any attendance guidelines the group might have.
Bottom line? If you are feeling alone and needing information and emotional support, a group might be a valuable way of connecting with people to help you cope with your situation. If you have questions, reach out to the moderator so you can get the information to make an informed decision.
I'd like to organize a support group for cancer survivors and people facing a cancer diagnosis. What do I need to do to get one started?A.
Support group has become a much broader term than many of us realize. What type of support group do you intend to start? At CancerCare, we offer three modalities of support group: including in-person, which is the format that most of us think of when we think of a support group; telephone, which is more like a weekly conference call that is moderated by an oncology social worker; and on-line, which is a message board format. Each modality has different features as well as limitations.
After deciding what modality of group will be most beneficial to your potential group members, you will also want to determine the content, structure and policies. Is your group about members sharing their experiences? Do you want an educational component with guest speakers? How often are you going to meet and where? Who is eligible to participate in the group? Who is going to moderate the group? What are the rules for discussion and maintaining privacy? What mechanisms are in place to enforce your group’s guidelines?
Familiarize yourself with existing groups. Local medical centers often offer support groups that are open to the community. Contact national advocacy organizations for specific cancer diagnoses, for example Us Too for prostate cancer, to find out if they have a chapter where you live. Cancer Support Community has a good overview of the process of creating a support group from scratch.
Are there support groups geared towards grandparents of a child with cancer?A.
While there may not be a local support group geared specifically toward grandparents of children with cancer, it is probably worth inquiring about caregiver support groups at your grandchild’s treatment center. At CancerCare, a grandparent whose grandchild has been diagnosed with cancer is eligible for any of our caregiving groups, whether in-person, over the telephone or online.
Like other caregivers, grandparents are likely to have a hard time adjusting to their grandchild’s diagnosis. You may need a place to express intense emotions, including fear, anger, sadness or grief in the presence of people who have had a similar experience. A support group can also be a place to exchange helpful information on coping and various other means of supporting oneself and one’s family.
Whether or not you find an accessible support group that specifically matches your demographic, it can be very helpful to connect with other people who care for a person with cancer. If there are no support groups in your area, perhaps you can organize an informal group that meets at a church or community senior center.
This booklet by the British organization The Children’s Cancer and Leukaemia Group, is a useful guide to grandparents of young children with cancer, and includes information on various ways support yourself, your children and your grandchildren in reacting and adjusting to your grandchild’s diagnosis.
I am seeking a support group for children under age 12 whose single mother is in stage 4 cancer. Please provide any available options.A.
Our Connecticut office currently offers a support group Crafting Ways to Cope for Children Who Have a Parent With Cancer. This group is for children ages 5 to 12 who have a parent with cancer. The group is led by an oncology social worker and offers craft activities as a way to help children ask questions, express feelings and share concerns about their parents.
Otherwise, you probably want to check with the mother’s treatment center to see if they provide a children’s support group. You can also contact your local affiliate of Cancer Support Community in order to get more information about what type of children’s program they offer.
CancerCare provides a number of publications, including Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis that address helping children who have a family member with cancer. Communication is the number one priority, since even young children can often sense when something is wrong, and if no one explains what is happening, will often imagine something worse than it really is, or even blame themselves. How and how much is communicated depends on the child’s unique personality, but providing an ongoing chance for them to express themselves, asking questions and sharing their feelings, is helpful for children of all ages.
Finally, it’s important to let children know that even though some other things around the house are probably going to be different for a while, that the child’s parents/grandparents/family members love for them hasn’t changed a bit.
For Breast Cancer
Is there a way to find triple-negative breast cancer specialists? And are there specific support groups or programs to speak with women with triple-negative breast cancer?A.
When coping with a diagnosis of triple-negative breast cancer, it is important to ensure that your medical team is well-informed about the latest research and best practices. While we are unable to recommend or endorse a specific doctor, here are some suggestions for seeking out a breast cancer specialist who is experienced with treating triple-negative breast cancer.
The National Cancer Institute has designated cancer centers throughout the United States and provides information on doctors practicing in your area. You can access their online database or call them at 800-4-CANCER.
Ask your current doctor for a referral. Many people may feel hesitant to ask for a second opinion for fear of creating an uncomfortable relationship with the doctor. But be assured that a second opinion is considered a routine and necessary component of one’s health care plan. In fact, most medical professionals expect their patients to receive a second opinion.
Researching clinical trials in your area will allow you to learn which doctors are participating, and get an idea of specialists in the field. A free, confidential resource to locate clinical trials accepting women with triple-negative breast cancer is The Clinical Trials Matching Service website and helpline: 877-769-4827.
Contact the local county medical society, hospitals or breast cancer center in your area.
It is perfectly acceptable to ask doctors how many of their patients have TNBC, and how familiar they are with treating this subtype of breast cancer.
To answer your second question, getting support from other women who have experienced triple negative breast cancer can be a valuable tool to feel less alone and more empowered. Organizations such as Living Beyond Breast Cancer and the American Cancer Society provide a service called peer matching, in which you can be paired with a volunteer who had a similar diagnosis. The Triple Negative Breast Cancer Foundation has a very active online forum where people impacted by TNBC discuss various topics. There may be support groups in your area where you can connect with peers, as well. Your oncology social worker is a good resource for local referrals.
For Carcinoid Tumor
I have a very rare cancer, and it is called well-differentiated neuroendocrine tumor (carcinoid). I have been told there is not a cure for this type of cancer, but I am hoping to find a support group (or people to chat or do activities with). Can you help me?A.
A support group can be a wonderful way to find social connection, resources and information from others going through similar experiences. Although your cancer is rare, there are still excellent supportive resources available.
For example, a disease-specific organization like The Carcinoid Cancer Foundation offers its own patient forums in addition to other services like resource referrals, education and advocacy.
Other organizations like the Rare Cancer Alliance offer patient forums geared towards those with rare conditions; they offer one for those diagnosed with carcinoid tumors and one for those with neuroendocrine tumors. Similarly, the Association of Cancer Online Resources (ACOR) hosts groups through an email listserv, including a Carcinoid Cancer and Neuroendocrine Tumors Group.
You may also want to explore “peer-matching” services offered by organizations like Cancer Hope Network, Imerman Angels and WhatNext. They work to match patients with one-to-one support provided by those with a similar cancer history.
Finally, CancerCare offers a number of general face-to-face, telephone, and online support groups that may meet your needs. To learn more about our current offerings and how to register, you can contact our Hopeline at 800-813-HOPE (4673) to speak to one of our professional oncology social workers.
For Cervical Cancer
I'd like to connect with other women who have cervical cancer. I feel like they'll understand me best. Can you tell me where I should look?A.
Support groups are a wonderful opportunity to speak with other women diagnosed with cervical cancer. Support groups provide a safe environment to share thoughts, ideas and feelings with others in a similar circumstance. Members in a support group often feel less isolated during their cancer experience as they exchange useful information on medical issues, resources and practical concerns.
CancerCare provides online, telephone and face-to-face support groups that connect you with women diagnosed with cervical cancer. All support groups are free and led by professional oncology social workers.
The National Cervical Cancer Coalition (NCCC) offers a Phone and E-mail Pals Program that matches cervical cancer survivors with others in a similar situation. For more information on this program, contact NCCC at 1-818-992-4242.
And finally, EyesOnThePrize.org has an email discussion group for women with gynecologic cancers.
For Colorectal Cancer
My mother was diagnosed with stage 3 colon cancer and I'm worried she is pulling away from those who care about her. I think it might be good for her to talk to others who've been diagnosed to get some guidance. Where should she go?A.
Your question is a good example of how a cancer diagnosis affects the entire family, not just the loved one who was diagnosed. Both caregivers and patients share similar challenges, although with different perspectives. Speaking with people in a similar situation can often be helpful. Many hospitals offer support groups, so I would begin your search by speaking with a hospital social worker who can let you know about available support groups. If you are having difficulty finding local face-to-face support groups or if traveling is difficult, CancerCare offers both telephone and online support groups for colorectal cancer patients and for caregivers.
There are additional organizations that offer support groups, information on how to connect with a local support group, or “buddy” matching programs:
- Colon Cancer Alliance
- American Cancer Society
- The Cancer Support Community
- United Ostomy Associations of America
We know that “one size does not fit all,” and it’s important to determine the type of support services most beneficial to the person in need. A support group can be helpful, and often individual counseling may be more appropriate. Introduce this information to your mom and allow her to ask questions and share her decision with you. And don’t forget to consider support for yourself. Our support group participants tell us they are glad they took the chance to connect with others, and report that they now have a greater understanding of their treatment, side-effects, options, medications, and emotions.
I'd like to meet people with colon cancer who understand what it's like, but I can't seem to find anything near where I live, just groups for people with any type of cancer. Can you help?A.
A cancer diagnosis can feel very isolating. Wanting to establish a caring community is a wonderful way to find support from other people going through a similar experience while at the same time reducing isolation. It is often difficult to find face-to-face groups specifically for people with colorectal cancer. CancerCare understands the importance of staying connected with others and offers two ongoing colorectal cancer patient groups:
- Online Colorectal Cancer Patient Support Group
- Telephone Colorectal Cancer Patient Support Group (meets on Thursdays from 4-5:00 p.m. EST)
These groups are both informative and supportive. Group discussions cover a range of topics such as dealing with tough side effects, not wanting to be a burden to family and friends, having limited supports both emotionally and financially, being disappointed in family and friends to communicating with one’s medical team and where to find additional supports. Group sessions can be very serious but also can be light and humorous. We emphasize being compassionate and empathetic with all of our group interactions.
Please remember that you are not alone. CancerCare support services are there to help you.
For Ovarian Cancer
I was diagnosed a few years ago with ovarian cancer and have finished my treatment, but now I'm afraid of recurrence. Is this normal?A.
After a diagnosis of ovarian cancer, a woman can feel vulnerable and experience a lot of uncertainty. The emotional, social and physical experience of having ovarian cancer can be overwhelming and living with this experience often leaves one with a fear of this happening again.
While your fears are typical, at times they many vary. For example, around the time of your check-up, blood tests, or when a milestones or anniversary is approaching you may feel sad, irritable, or anxious. Allowing yourself to acknowledge and accept your feelings is the first step. Developing ways to manage these feelings is extremely important and a way to be kind to yourself. An important act of kindness to yourself is to live in the now and find ways to balance your fear of recurrence with enjoying your life, and the hope for continued wellness.
Ways to manage fear of recurrence:
- Get support. Many women find comfort in a support group. Share your feelings and learn how others are coping with challenging and common fears, which can provide you with a community of strength and understanding. You can also speak with a CancerCare oncology social worker about your concerns.
- Take good care of yourself. Get enough sleep and reduce stress. Find things to do that are comforting such as meditation, yoga class, writing in a journal, or spending time with your pet. We all have activities we find soothing and it is important to develop these and do them when you need to.
- Communicate. Share your feelings with the people who are important to you. Let them know how you are, and what they can do to help. Set limits if you need to by deciding what you can commit to and what you can do another day.
For Rare Cancers
My brother was diagnosed with salivary gland cancer and it's supposedly rare. How can I find other patients or organizations that can help support him?A.
A cancer diagnosis can feel very isolating, particularly when the diagnosis is a rare one. Helping your brother find community and social connection through a support group is one way to help to reduce those feeling of isolation. In addition, groups can be a valuable source of emotional support, resources, and information from others going through similar experiences. While it may be difficult to find a group specific to people with salivary gland cancer, there are many excellent supportive resources available.
For example, CancerCare offers a number of face-to-face, telephone and online support groups. To learn more about our current offerings and how to register, you can contact our Hopeline at 800-813-HOPE (4673) to speak to one of our professional oncology social workers. Other organizations like the Rare Cancer Alliance offer patient forums geared towards those with rare conditions. Similarly, the Association of Cancer Online Resources (ACOR) hosts groups through an email listserv, including a Rare Cancers Online Community.
You may also want to explore peer-matching services offered by organizations like Cancer Hope Network, Imerman Angels and WhatNext. They work to match patients with one-to-one support provided by those with a similar cancer history.
Finally, disease-specific organizations (e.g., The Oral Cancer Foundation, Support for People with Oral and Head and Neck Cancer) can provide additional guidance and information. They frequently offer their own patient forums in addition to other services like education, advocacy and resource referrals.
A family member has been diagnosed and I think she should see someone who specializes in treating sarcoma (I don't think this is currently the case). Do you know where I can find that information? Also, do you offer a support group for people with sarcoma?A.
You raise an important question regarding the importance of specialized expertise in the diagnosis and treatment of sarcoma, which is a cancer of the bone or connective tissues, including bone, fat, muscle, blood vessels, nerves, deep skin tissue and cartilage.
Because sarcoma is rare, there is an initial challenge of determining which bone and soft-tissue tumors are sarcomas and which are benign (not cancerous). That is why it is important, wherever possible, to seek advice at sarcoma treatment centers. Experts at these centers have the latest information and important experience in diagnosing and treating this type of cancer. A list of some of these centers can be found on the Sarcoma Alliance website, www.sarcomaalliance.org. Your doctor may also be able to refer you to a nearby sarcoma treatment center.
The Sarcoma Alliance offers list of support groups, including online communities available through the Association of Online Cancer Resources. At this time, CancerCare does not offer a support group for people with sarcoma, but anyone affected by sarcoma can join one of our other cancer-related groups, including those for young adults and caregivers. You can find all of CancerCare’s sarcoma-related resources, including workshops and publications, on our website.