Breast Cancer Support for Uncommon Cancer Types

Phyllis Johnson Health Guide
  • Most people think of breast cancer as one disease, but actually more than ten main types exist. If you look at the tumor profiles within those types, there are even more variations.


    I was diagnosed in 1998 with inflammatory breast cancer (IBC), a form of cancer that affects about one to five percent of breast cancer patients. It took three years before I met someone with my kind of cancer face to face. When well-meaning people told me about how their Aunt Ethel had beaten breast cancer, it wasn't the least bit of comfort to me.


    I needed to hear from someone who had beaten inflammatory breast cancer. If you are in a similar situation, where can you find support?

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    First, don't write off local breast cancer support groups, even if most of the people there aren't like you. The support group I went to was mainly retired women with "regular" breast cancer. One woman was in her early 30's, and there was me, a 50-year-old with IBC. Both of us had cancers that were much more aggressive than the other women's, and both of us still had concerns about how our disease would affect our careers. I imagine the young woman felt even more isolated than I did as she sat in that room with women more than a quarter of a century older.


    But, the local support group was still valuable because it gave me local information. I learned about local doctors. I learned about the best place to go for a prosthesis. I was the only one in the group having chemo, surgery AND radiation, but as I went through each step, I was able to share my experiences with others and learn tips for coping from people who lived in my town.


    One of the most valuable aspects of my local support group was the friendship I developed with the oncology nurse who led it. Jan has given me wonderful advice through my nine-and-a-half-year journey even though I now live a thousand miles away from her. So check out your local group. You may find good contacts and friendships there.


    But, you will also need support from people who have a similar cancer. Let other people on this site know about your type of cancer and see if you can get some support across the Internet. Check and see if there is a mailing list for people in your situation. I belong to two IBC mailing lists.


    Pete Bevin and his late wife Menya Wolfe started one of the first computer support groups in 1997 when she was diagnosed with IBC. That list taught me facts about IBC, but it also taught me how to advocate for myself and to work as a partner with my doctors. It provided me emotional support through the most difficult days of my life.


    Ginny Mason, Owen Johnson, and a bunch of great volunteers work with the IBC Research Foundation to create a wonderful website and mailing list at They also provide a toll-free phone number (1-877-stop-ibc) for people who need to talk to someone.


    Other organizations run phone lines that can match you with someone with your kind of cancer. MD Anderson Cancer Center matched me with two IBC survivors who called me in the early days of my diagnosis when I needed to hear a knowledgeable and friendly voice.


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    I consider many of the people I've met only in cyberspace to be some of my best friends. When I do get a chance to meet them in person, hugs, laughter, tears, and non-stop conversation always follow.


    No one should have to struggle with cancer alone. In 1998, 170,000 women were diagnosed with breast cancer in the United States. That meant that about 1,700 of them had IBC. Although none of them lived in my town, Pete and Menya made it possible for me to meet some of them and saved my life as surely as my doctors did.

Published On: November 29, 2007