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Meeting Other Survivors
Talking with other survivors can help you learn how others manage the physical, emotional and practical challenges cancer brings. There are many ways to meet other survivors who want to talk about their experiences and share information.
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Meeting Other Survivors: Detailed Information
This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources
Meeting others who have been affected by cancer is something that can be important to survivors at anytime during the cancer journey. There are a variety of ways to meet other survivors, ranging from joining a support group to participating in an online group for people who have been affected by cancer.
Talking with another survivor and sharing experiences is often a way to find and share important information, experiences, and hope. However, in some cases, survivors may feel reluctant to meet someone who is also dealing with cancer. There may be a fear of getting close to another survivor because he or she might experience challenges or medical problems during your friendship. It is okay to feel this way--you only need to do whatever is best for your situation.
What can a cancer survivor gain from meeting other survivors?
You may receive a lot of support from your loved ones and friends. However, there may be times when it is becomes important to talk with others who have experienced cancer in the way you have. In some cases, you may feel like you have to protect the people you love from your feelings or concerns that could be upsetting to them. Other survivors are likely to understand in a way that is different from the way those who have not had cancer can.
Survivors often have a great deal of knowledge to share about how to deal with experiences and challenges presented by cancer and treatment. Some common reasons survivors want to meet and talk to other survivors include:
- To get information about cancer and treatment
- To receive encouragement from others who have the experience
- To find out how to solve problems
- To be inspired by the personal stories of survivors
- To realize that many survivors are experiencing similar things
- To feel more in control of the situation
- To laugh or cry with other survivors who have been through similar situations
Every cancer survivor is different, but many survivors find that they have things in common with other survivors besides surviving cancer. Sometimes, you may spend time with another cancer survivor and never talk about cancer. Other times you may discuss feelings or how to deal with difficult challenges. It can be comforting to spend time with people who have shared similar experiences.
There may be times when it is confusing or disturbing to hear about another survivor's story or experience. Even though this could happen, the benefits might outweigh the risks. Meeting other survivors who have been through similar experiences often proves to be very helpful and supportive.
Many things can be learned from other survivors such as:
- How to talk with a child about cancer
- How to talk with people at work
- How to deal with any aftereffects of treatment
- How to deal with fears about the future
- How to remain hopeful as you deal with a chronic illness
Why can it be helpful to talk with other survivors who have the same type of cancer or are of a similar age?
Talking with others with the same type of cancer can be very helpful for some survivors. Those people will have an idea, as much as anyone can, about what you are going through. You may not need to explain your reactions to your experience with cancer in the same way that you might with those who have not had cancer.
You may find that there are benefits in talking with survivors who are in the same age range as you for reasons such as:
- Children who have survived very different types of cancer may be able to share similar experiences in ways they cannot with parents or others who are older.
- Young adults who have been through treatment can talk about issues that are unique to their age group such as concerns about fertility and when to share their cancer diagnosis with people they are dating.
- Older survivors can discuss concerns they may have such as the fear that they might have to move in with their children for a time or become dependent on others.
Keep in mind, that even if another survivor has things in common, such as age or the same cancer type, your experiences and reactions may be very different. Some things that may make your experiences different from other survivors:
- The personalities of each of you and how stress is handled
- The genes each of you were born with and other health factors
- The family background or culture of each of you
- The type of treatment each of you have had
- The support systems you have
- Your financial situation
- The stage of your cancer
Are support groups a good way to meet other survivors?
A good support group will generally touch on many things ranging from difficult challenges to inspirational stories. Members may laugh together and share all types of experiences and feelings. Many survivors report that they feel much better after meeting with others who share their experiences. Problems can feel more manageable when you talk about them with other survivors who understand.
Each support group is unique. If the first group you try is not a good fit for your needs, try another one. Before you attend the first meeting, you may want to talk with a member of your health care team or the support group leader to find out if the specific group is likely to be appropriate for your needs. If it is not, they may be able to suggest another group that will be.
A support group should allow you to:
- Share experiences with other survivors
- Learn new ways to handle difficult situations
- Talk about your reactions and feelings to changes in your life
Is the Internet a good way to meet other survivors?
The Internet can be a useful tool for meeting other survivors. Many websites are dedicated to bringing survivors of different types of cancers and backgrounds together. Some are for people with a particular kind of cancer. Others are generally for survivors of all types of cancer. If you do not feel comfortable talking in a group or are not able to leave your home, the Internet can be a good place to help you meet other survivors.
Some advantages to using the Internet to meet other survivors include:
- There is no need to identify yourself.
- It may be easier to express worries and concerns.
- There is not the pressure that comes with talking in a group.
- You can meet survivors from all over the world.
While the Internet can be a great way to meet survivors, use caution when meeting others online and providing information. Do not give out personal information through any website unless you know for certain how they will use that information and why they need it. It might generally be a good idea to start with groups offered through nonprofit cancer organizations. An online chat room may occasionally include someone who is negative and who only talks about the bad things they are experiencing. If this is hard for you, you may want to find another chat room or take a break until that individual has left the website.
Discuss any advice that you get from a resource or another survivor with your health care team. Always do this before you make changes in your treatment, diet, or exercise routines, as well as anything else that could affect your physical or emotional well-being.
This document was produced in collaboration with:
Joan Hermann, LSW
Director, Social Work Services
Fox Chase Cancer Center
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Meeting Other Survivors: Suggestions
The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.
- Consider participating in a support group to meet other cancer survivors.
Support groups offer a safe environment to share experiences with other survivors. You can learn new ways to handle difficult situations and talk about emotions. You will see different styles of coping with stress and adjusting to life as a cancer survivor. If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you.
Cancer support groups exist in most communities. Some ways to find out more about support groups in your area include:
- Asking your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
- Calling a nearby cancer center or university hospital and ask about support groups.
- Visiting LIVESTRONG SurvivorCare at www.livestrong.org/survivorcare, or calling 1-866-235-7205 for information on support groups.
- Talk with a licensed counselor if you aren't getting the emotional support you need from your support system.
Ask a member of your health care team for a referral to a counselor or therapist who works with cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with cancer survivors and their families. Even if you are not a patient at a cancer center, the oncology social worker may meet with you or refer you to someone else in the community.
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Meeting Other Survivors: Additional Resources
The resources listed below provide more detailed information and support services to help you with meeting other survivors. Please read the Detailed Information and Suggestions document for more information and questions to ask.
LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare
Email: Send email through the LIVESTRONG website.
Phone: 1-866-673-7205
1-866-927-7205 (Spanish)
Intake Coordinator is available for calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (Central Time). Voicemail is available after hours.
LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.
American Cancer Society (ACS)
www.cancer.org
Email: Submit questions in English or Spanish from the "Contact Us" page.
Phone: 1-800-227-2345
TTY for deaf or hard of hearing callers: 1-866-228-4327
The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.
Cancer Hope Network
www.cancerhopenetwork.org
Email: info@cancerhopenetwork.org
Phone: 1-877-HOPE NET (1-877-467-3638)
This number is answered Monday-Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours.
Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. They offer support by matching cancer patients or family members with trained volunteers who have already undergone and recovered from a similar cancer experience. You can submit your request by phone or by email. A volunteer will try to contact you within 24 hours.
CaringBridge
www.caringbridge.org
Email: Send email through the website.
Phone: 1-651-452-7940
CaringBridge is a nonprofit organization that offers free, easy-to-create web sites to connect family and friends during a health crisis. This site can help ease the burden of keeping loved ones updated. It provides a way for them to send their support and encouragement. Step-by-step instructions are provided for creating and updating the site you create.
Gilda's Club Worldwide
www.gildasclub.org
Email: info@gildasclub.org
Phone: 1-888- 445-3248
Gilda's Club chapters are available across the U.S. They provide free services to survivors, loved ones and friends. Activities include classes and workshops on nutrition, exercise, and relaxation during and after treatment. The clubs also host a variety of social events, wellness groups, family groups and lectures. The website includes cancer information, videos, transcripts and news articles. Information on the site is available in Spanish.
Vital Options
www.vitaloptions.org
Email: info@vitaloptions.org
Phone: 1-818-508-5657
For radio broadcast: 1-800-477-7666
Vital Options is an international nonprofit organization that promotes communication, support and advocacy for survivors and their families, friends and caregivers. The organization produces a weekly cancer talk radio show called The Group Room that airs on select radio stations throughout the country or online. This show features leading cancer physicians, other oncology professionals and advocates. Listeners are invited to join the discussion toll free. All program, station and call-in information is posted on the Vital Options website where past shows are also archived. The website also provides links to other cancer organizations, a message board, information on clinical trials, and event calendars.
The Wellness Community
www.thewellnesscommunity.org
Email: Send email through the website.
Phone: 1-888-793-9355
The Wellness Community is an international non-profit organization. It provides free support and education to people with cancer and their loved ones. Professionals lead support groups, educational workshops, nutrition and exercise programs. They help people affected by cancer regain control and reduce isolation regardless of the stage of their survivorship. Wellness Communities and satellite programs are located across the U.S. Online support groups for cancer survivors and caregivers are offered in both English and Spanish on their website.
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Meeting Other Survivors: Detailed Information
This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.
Meeting other survivors is something that can happen anytime during your survivorship. Sometimes you may meet other survivors by going to a support group or joining an online group for cancer survivors. You may also meet someone randomly and discover you are both survivors. However you meet another survivor, talking to him or her and sharing your experiences can provide you with important information, knowledge and hope.
While you may receive a lot of support from your family and your friends, sometimes talking to another person who has experienced cancer in the same way you have is helpful. You may feel like you have to protect the people you love from being upset. Other survivors may understand you in a way that is different from friends and family.
You may be frightened by what you learn from another survivor. You may fear that the other person will tell you something scary or depressing. Even though this could happen, meeting other survivors who have been through similar experiences can be helpful for survivors.
What can a cancer survivor gain from meeting other survivors?
Some reasons survivors want to meet and talk to other survivors:
- To get information about their cancer
- To get encouragement from others
- To find out how to solve problems
- To be inspired by personal stories
- To laugh or cry with other survivors who have been through similar situations
- To realize that many survivors are experiencing similar things
- To feel more in control of the situation
Survivors have a great deal of knowledge to share about how to deal with problems you haven’t encountered before.
Some examples of things you can learn from other survivors:
- How to talk to your child or younger sibling about cancer
- How to talk to people where you work
- How to deal with aftereffects from treatment
- How to deal with fears about the future
- How to remain hopeful when you are dealing with a chronic illness
You may spend time with another cancer survivor and never talk about cancer. It may be nice just to spend some time with people who have shared similar experiences or have similar priorities. Every cancer survivor is different, but many survivors find that they have a lot in common with other survivors besides surviving cancer.
Is it helpful to meet other survivors who are your age or who had your type of cancer?
Meeting with someone with the same kind of cancer can be helpful for some survivors. That person will know, as much as anyone else can, what you’re going through. You won’t have to explain your reactions to the experience in the same way that you might have to with your friends or family, who, unless they’ve had cancer, can only imagine what it is like.
Meeting a survivor in your age range may be more useful than meeting a survivor who had the same kind of cancer you did.
Some examples of things you can learn from meeting other survivors your own age:
- Children who have survived very different types of cancer may be able to share similar experiences about changes in their relationships with their parents or their friends.
- Young adults who have been through treatment can talk about when to share their cancer history with people they are dating.
- Older survivors can discuss difficulties they may experience if they have to move in with their children or become dependent again.
The reactions of other survivors to a cancer diagnosis and treatment may be different from yours. Even with the same cancer type and age, your reactions may be different than someone just like you.
Some things that may make your experiences different from other survivors:
- Your personality
- The genes you were born with
- Your family background or culture
- The way your body reacts to chemotherapy or radiation
- The kind of support you already have
Some survivors are reluctant to meet someone similar to themselves and prefer to meet someone totally different. You may fear getting close to another survivor. You may worry that s/he will have more medical problems during your friendship. These concerns are okay because your first responsibility is to yourself. At all times, you must do whatever makes you comfortable.
Are support groups a good way to meet other survivors?
In a support group, you can:
- Share experiences with other survivors
- Learn new ways to handle difficult situations
- Talk about your reactions and feelings to changes in your life
Knowing what happens in a support group is helpful. Many people think support groups focus only on the bad things.
You may not want to attend a support group because you don’t want to:
- Hear about depressing things
- Hear anything scary
- Spend the whole time talking about negative things
A good support group will focus on more than the bad things. Often people laugh and share fun or positive experiences in support groups. Support groups can be inspirational. People who attend frequently talk about how much better they feel after meeting the other survivors in the group. Problems always seem more manageable when you talk about them with other survivors who understand.
If the first support group you try is not a good fit for your needs, try another one. Talk to the group leader to discuss if the group is appropriate for your needs. If it isn’t, the leader may be able to recommend another group you can try.
Is the Internet a good way to meet other survivors?
The Internet can be useful in meeting other survivors. Many Web sites are dedicated to bringing survivors of all different cancers and backgrounds together. Some are for people with a particular kind of cancer. Others are generic, which means they are for survivors of all types of cancer. If you don’t feel comfortable talking in a group or aren’t able to leave your home, the Internet can help you meet other survivors. If you don’t own a computer, your public library has computers available.
Some advantages to using the Internet to meet other survivors include:
- You don’t have to identify yourself.
- You may find it easier to write down your worries and concerns.
- You don’t have to feel the pressure of talking in a group.
- You can meet survivors from all over the world.
While the Internet is a great way to meet survivors, be careful about the people you meet and the information you share.
- Do not give out personal information to any Web site unless you find out how they will use that information and why they need it.
- You may meet negative people in the chat room who only talk about the bad things they are experiencing. If this is hard for you, find another chat room or take a break. Come back when those people have left the chat room.
- Discuss any advice you get from another survivor on the Internet with your health care team before making any changes in your diet, exercise routine or anything else that will affect your physical or emotional health.
You can meet survivors in many different ways. Find the way that feels most comfortable to you. Meeting other survivors is something that many survivors feel is an important part of their survivorship. It helps them to spend time with people who understand what life after cancer is like.
This document was produced in collaboration with:
Joan Hermann, LSW
Director, Social Work Services
Fox Chase Cancer Center
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Meeting Other Survivors: Suggestions
Meet other survivors through a support group.
Support groups provide a safe environment to share experiences with other survivors, learn new ways to handle difficult situations and talk about emotions. You will see different styles of coping with stress and adjusting to life as a cancer survivor. If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you.
Cancer support groups exist in most communities.
Some ways to find out more about support groups in your area:
- Ask your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
- Call a nearby cancer center or university hospital and ask about support groups.
- Call the American Cancer Society at 1-800-ACS-2345 (1-800-227-2345) and request a list of support groups and cancer centers in your area.
- Visit LIVESTRONG SurvivorCare at www.livestrong.org/survivorcare, or call 1-866-235-7205 for information on support groups.
Talk to a counselor/therapist if you aren’t getting the emotional support you need from your emotional support system.
Ask a member of your health care team for a referral to a therapist who works with other cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with cancer survivors and their families. Even if you are not a patient at a cancer center, the oncology social worker may meet with you or refer you to someone else in the community.
It is important to interview the therapist to find out if s/he is the right professional for you. Speak honestly with the therapist and let him or her know your reasons for wanting to work with a therapist.
Examples of questions to ask the therapist:
- What type of education background do you have?
- What license do you have?
- What is your experience working with people with cancer?
- What do you understand about the emotional response to this illness?
- Do you take my insurance?
- Do you work with people who are anxious? Depressed?
- Do you know community resources for people with cancer?
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Meeting Other Survivors: Additional Resources
The resources listed below provide more detailed information and support services to help you meet other survivors. Please read the Detailed Information and Suggestions document for more information and questions to ask.
Click a resource for more information:
LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare
| Email: |
Send email through the Web site. |
| Phone: |
1-866-235-7205 |
| |
Case managers take calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (EST). Voicemail is available after hours. |
LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed.
The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply.
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American Cancer Society
www.cancer.org
| Email: |
Questions can be submitted in English or Spanish from the "Contact Us" page. |
| Phone: |
1-800-ACS-2345 (1-800-227-2345) |
| |
TTY for deaf or hard of hearing callers: 1-866-228-4327 |
| |
English-speaking information specialists are available 24 hours a day. Spanish-speaking information specialists are available Monday-Friday, 6:30 a.m. to 7:00 p.m. (CST). You can leave a message in English or Spanish 24 hours a day. |
The American Cancer Society Web site contains information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area, or you can join online groups and message boards. Some information on the Web site is available in Spanish, Chinese, Korean and Vietnamese. Information specialists can answer questions 24 hours a day by phone or email.
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Cancer Hope Network
www.cancerhopenetwork.org
| Email: |
info@cancerhopenetwork.org |
| Phone: |
1-877-HOPE NET (1-877-467-3638) |
| |
This number is answered Monday-Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours. |
Cancer Hope Network provides free and confidential one-on-one support for adult survivors and their families. Survivors or family members are matched with a trained volunteer who has gone through and recovered from a similar cancer experience. Volunteers provide emotional support, and they give helpful information about their experiences with managing the physical, emotional and practical challenges of cancer. Whether you submit your request by phone or by email, a volunteer will try to contact you within 24 hours.
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Vital Options
www.vitaloptions.org
Vital Options is an international nonprofit organization that promotes communication, support and advocacy for survivors and their families, friends and caregivers. The organization produces a weekly cancer talk radio show called The Group Room® that airs on select radio stations throughout the country or via the Internet. This show features leading cancer physicians, other oncology professionals and advocates. Listeners are invited to join the discussion toll free. All program, station and call-in information is posted on the Vital Options Web site where past shows are also archived. The site also provides links to other cancer organizations, a message board, information on clinical trials, and event calendars.
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Gilda's Club Worldwide
www.gildasclub.org
Gilda's Club chapters across the U.S. provide free direct services to survivors, family, and friends. Activities include classes and workshops on nutrition, exercise, and relaxation during and after treatment. The clubs also host a variety of social events, wellness groups, family groups and lectures. The Web site includes cancer-specific information, videos, transcripts and news articles. Information on the site is available in Spanish.
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The Wellness Community
www.thewellnesscommunity.org
The Wellness Community is an international non-profit organization that provides free support and education to people with cancer and their loved ones. Professionally-led support groups, educational workshops, nutrition and exercise programs, and mind/body classes, help people affected by cancer learn vital skills that enable them to regain control and reduce isolation regardless of the stage of their survivorship. Wellness Communities and satellite programs are located across the U.S. Online support groups for cancer survivors and caregivers are offered in both English and Spanish on their Web site.
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CaringBridge
www.caringbridge.org/ext/livestrong
| Email: |
Send email through the Web site. |
| Phone: |
(651) 789-2300 |
CaringBridge® is a nonprofit organization that offers free, easy-to-create web sites to connect family and friends during a health crisis. A CaringBridge site eases the burden of keeping loved ones updated, while also providing a way for them to send their support and encouragement. Step-by-step instructions are provided for creating and updating the site you create.
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