Q. Is there a support group for long term adult survivors with serious late effect problems, such as radiation plexopathy?
CancerCare offers online support groups for adult cancer survivors who are still within 2 years of completing their cancer treatments. The Post Treatment Survivorship Support Group is for participants of all ages, while the Young Adult Post Treatment Survivorship Support Group is for people ages 39 and under. While not specifically focused on radiation plexopathy, both groups address the issue of long term treatment side effects because it is such a common challenge for survivors as they transition to life after cancer. Our support groups also discuss other survivorship concerns including fears of recurrence, creating new daily routines including the transition back to work or school, acclimating to physical changes experienced during treatment, as well as other topics that the group moderator or group members themselves may raise in the course of sharing more about their experiences.
To join one of our groups, we do ask that you complete a short online screening to confirm that the groups will meet your needs and expectations.
But if you are interested in seeking out more specific support for radiation plexopathy, there is a resource list featured on Cancer Survivors Network that includes links to personal blogs as well as a private Facebook group. Please be aware that in most cases, a private FB group is not moderated by a trained professional and your confidentiality is not guaranteed.
Q. Can I join an online support group if I live outside of the U.S.?
Thank you for your interest in our online support groups. At this time, CancerCare’s online support groups are only available to people residing within the United States (including Puerto Rico and U.S. territories).
For more information about support groups, read our publication “Why Join a Support Group?”.
Q. Recently my dad was diagnosed with cancer, and I've chosen to take on being his primary caregiver. This is a emotional and stressful experience. I am staying at their house 3 hours away from my husband and friends, making it more difficult. Every online support group is geared towards young adult spouses, and I'm one year too old to qualify. Do you know of any support groups online for my situation?
Being a primary caregiver can absolutely be an emotional and stressful experience – and in your case, made more difficult by the fact that you are also far from your husband and friends. Joining a support group is a wonderful first step in finding a community of others who “get it.” Being connected with people who understand and who are possibly facing some of the same struggles and questions can be hugely meaningful. I am so glad you’re reaching out for this kind of support and please know that we do offer an online group for you.
Our Online Young Adult Caregiver Support Group would be a great option; the majority of participants are caring for a parent just as you are. While this group and our other young adult groups are usually aimed at people between the ages of 20 and 39, we are flexible. For someone like yourself who is still so close in age and prefers this type of group, we can certainly make it available to you. To join, we do ask that you complete a short online screening to confirm that the group will meet your needs and expectations.
I also want to mention that CancerCare offers short-term telephone counseling provided by licensed oncology social workers. Many of our online group members choose to supplement their group experience with individual counseling. If you are interested in learning more or possibly enrolling, I encourage you to call CancerCare’s Hopeline at 800-813-4673. All the calls are answered by oncology social workers who can get you connect you with support. Our hours are Mondays to Thursdays 9 a.m. -7 p.m. EST and Fridays 9 a.m. -5 p.m.
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” on the internet. Some of these groups are offered through social media platforms like Facebook, or make use of emerging technologies like virtual reality. But traditionally and most commonly, online support groups are split into the following categories:
Chat Group – In online chat, the conversation takes place in real-time, which means that when you type in a message, the other members of the group see it instantly and can respond. A chat group is usually held at a specific time and day.
Listserv – This kind of group allows its members to email each other with questions and comments. Because emails are automatically sent to everyone on the list, the number of messages you receive each day can vary and be high at times.
Message Board – CancerCare offers this type of support group, which features a bulletin board-style forum that is accessible to members, 24 hours a day, seven days a week. Participants can write comments and questions, and read and respond to one another. A message board is usually more flexible, as members can post whenever it’s most convenient for them.
Because participating in an online group is anonymous, some people find it a bit impersonal and prefer meeting face-to-face. Other people may prefer the anonymity and feel more at ease sharing with others. That being said, one unique and positive feature of online groups is that they allow people to connect with others in similar circumstances – regardless of where they live. For instance, CancerCare’s online groups are offered by specific cancer diagnoses and populations to ensure that participants are getting support from a community of peers.
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Answers From Other Experts About Support Groups
Are there support groups geared towards grandparents of a child with cancer?
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.
The British organization The Children’s Cancer and Leukaemia Group provides helpful information for 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.
You should 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.
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?
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 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.
What are support groups and how can they help me? How do I know if they're right for me?
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.
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?
As a caregiver, you may feel that your son should join a support group to help him navigate the challenges he may face in regards to his diagnosis and treatment. The difficult part of all of this is that your son must be able to make that decision on his own. As a young adult facing cancer, he may need to understand what his cancer diagnosis and treatment will look like before he is able to give and get support from a group. Managing doctor’s appointments and scheduling treatments can be taxing, however addressing the benefits he may find in a support group is the first step in educating him about how a support group can help.
Support groups can offer a network of comfort and encouragement, a place of unbiased support and an environment that a young adult does not have to explain what he or she is going through because the other group members will understand. CancerCare offers a face-to-face Young Adult Patient Support Group for anyone located in the New York City area. In addition, we offer several patient online support groups. Your son may also want to reach out to Stupid Cancer, an organization that addresses several young adult cancer issues through advocacy, support and more.
As a caregiver, you may want to look into services for yourself. You can contact CancerCare’s Hopeline at 800-813-HOPE (4673) to learn more about our services for caregivers. In addition, you may find some of our publications helpful in navigating your new role as a caregiver.
I 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?
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 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?
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'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?
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.
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 LiveSTRONG Foundation 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?
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.