Connect With Other Survivors to Cope with Cancer Treatment

Phyllis Johnson Health Guide
  • Writing your way through breast cancer can mean keeping personal notes, journaling, and communicating with friends and family through blogs or e-mails.  Maybe you’ve even written some poems about your experience.  At some point though you will probably need to connect to other people who share your cancer experience.


    When I was diagnosed with inflammatory breast cancer (IBC), I was comforted by conversations with one of my friends who had also had an advanced stage cancer, but his was thyroid cancer.  People kept trying to link me up with breast cancer survivors, not understanding that it was only minimally helpful for me to talk to someone who had survived a Stage I or II cancer.  She could tell me about her experience with surgery, or chemo, or radiation, but I was having all three.  The fact that she was still alive after five or ten or twenty years didn’t reassure me.  She had never faced my prognosis.

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    Fortunately, I soon found a mailing list for people dealing with IBC.  Being able to write to other people who were going through the same experience was a literal life saver for me.  I learned what questions to ask, and because I had a relatively rare form of cancer, I learned more about some of the issues in IBC treatment than my doctors knew.  In time, they were asking me about whether people on my mailing list were receiving certain treatments and how they were doing.


    Pete Bevin and his late wife Menya Wolfe started the mailing list because there was so little information and support for people with IBC at the time of her own IBC diagnosis.  For eleven years that mailing list has been the place I go to ask questions, share my joys, and whine about my problems.  The people there really know what I am going through.  Some have become very good friends even though we may have never met in person.


    As you write your way through breast cancer, you’ll probably want to write to other people who share your experience.  That’s why HealthCentral is here.  You can write a Share Post or ask a question in the question section.  Other people will learn from your story.  For everyone who posts, there are many more reading and learning.


    If you are like me and have an unusual feature about your cancer, you may also want to reach out to another group.  Here are a few I know about.  I’m not a member of these, so I don’t know about the tone and frequency of posts, but all of these organizations have reputable programs.


    The Young Survival Coalition. 

    The Young Survival Coalition provides support for women age 40 or younger with breast cancer.  I’ve heard people praise their conferences.  They also have a bulletin board that might be a great outlet for you to write about your experiences as a young woman with breast cancer, and they publish survivor stories.  Think about sharing your story there.


    FORCE (Facing our Risk of Cancer Empowered).

    FORCE is for people who have the BRCA 1 or BRCA 2 gene.   Folks in this situation need information about both cancer prevention and treatment.  An IBC friend of mine also has the BRCA gene.  Last year she attended the FORCE conference and raved about the support she received from the organization.  Their website offers multiple outlets for writing including message boards, a chat room, and groups on Facebook and MySpace.  They also have a page of stories from members.


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    The bcmets mailing list.  This is another site started by Pete and Menya, in this case for people whose breast cancer has metastasized. The bcmets mailing list works through your email.  People write the list with questions and comments and respond through email.  Pete tells me there are currently about 1,000 mailing list members with about 250 who write regularly.  


    Advanced Breast Cancer Support Community.  

    This social networking site is run by a group called Inspire.  According to the website, “Inspire was created in 2005 by a group of friends. We were each dealing with important medical issues in our families, and we found that while the Internet was a useful source for authoritative medical information, it was not a safe, welcoming place for us to find support.  We created Inspire to change all that. We envisioned a place where we as patients, caregivers, family and friends could support one another, and where we could do so in a safe, secure, privacy-protected environment.”


    Other groups?  If you know about another niche group that has been helpful for you, let us know about it. 


    Writing about your cancer can be an empowering experience.  Spelling and grammar don't matter.  Your story does.  Write a question.  Write about your side effects.  Write about your hopes and fears.  Write to your friends and family.  Reach out to strangers who share your experience with cancer.  Words matter.  Share yours.




Published On: May 24, 2009