For Any Cancer Diagnosis
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. 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. 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 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. 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.
For Carcinoid Tumor
Q. 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 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
Q. 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?
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
Q. 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?
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.
Q. 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 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
Q. 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?
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.
Q. I've been diagnosed with advanced ovarian cancer and I'd like to connect with others who are also in an advanced stage. Where should I look?
Sharing one’s feelings and learning how others cope in similar circumstances can provide you with a community of strength and guidance.
Here are my suggestions for finding a group:
CancerCare offers face-to-face, telephone, and online support groups that are led by professional oncology social workers.
The Association of Cancer Online Resources (ACOR) offers both ovarian and gynecologic cancer “listservs.” A listserv is a group that communicates through email. After you join (or “subscribe”) you will receive emails from others who post messages that are sent to everyone in the group. These groups often have a large number of members, so it is likely you can find others with a similar diagnosis to yours.
SHARE (Self-Help for Women with Breast or Ovarian Cancer) has a toll-free hotline, 1-866-891-2392, and can help you find local support groups.
Cancer Hope Network connects people with similar diagnoses for support and guidance.
For Rare Cancers
Q. 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 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.
Q. 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?
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.