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Komen and Women with Stage IV Breast Cancer


In recent weeks, many of us in the breast cancer blogosphere, including me, have written about what the term “survivor” means to us. I even polled readers on BreastCancerSisterhood.com’s Facebook page, but none of the responses or blogs have saddened me like this blog from my friend, Donna Peach. I’m reprinting it in hopes you’ll read it, and leave a comment that let’s Donna know you’re cheering for her, even though Komen might have been uncomfortable acknowledging her, and the existence of others with Stage IV breast cancer.

“Again, the Question: Who are Breast Cancer Survivors?” by Donna Peach
The word “survivor” in the world of cancer is one that is loosely used, misunderstood by most and loathed by many. When I was diagnosed, my oncology team told me that everyone with breast cancer is considered a survivor. I find that definition to be consistent within the medical community where they do not differentiate between those who are in remission and those who are in active treatment, regardless whether the treatment is for early stage or stage IV breast cancer.

After my remission went kaput, four years after my primary cancer, and I returned to active and strenuous treatment, I found that definitions in the lay population seemed to be different. Even among the populations that you might think would understand the term “survivor.” When I attended a Susan G. Komen event, the largest organization representing the world of survivorship in the land of breast cancer, I was a few months out from my diagnosis of bone metastasis, or stage IV, breast cancer. I had had extensive surgery on my back for the damage from the cancer, and it required me to use a walker and to wear a TLSO (thoraco-lumbo-sacral orthosis) brace. When I got to the site of the race, I asked a number of Komen volunteers and staff if there was a place for me to sign in or to go. They looked at me a bit oddly and responded to my statement that I was in treatment for mets, and they told me that the sign-in was “only for survivors” with a not-so-subtle tone of disbelief that I presented myself as a survivor. I felt a bit shell-shocked at, first, being at a breast cancer event of that magnitude and being told that I was not a survivor and, second, being made to feel uncomfortable because they seemed not to know what I was. They simply excluded me because they assumed I did not fit their impression of a survivor.

Still, I pursued my query. As I became inured to the responses I received, I became a bit more assertive. I said to one person, Well, really, don’t you think that if anyone is a survivor, it is women like me who are fighting to stay alive from mets: I got a blank stare. When it came time to participate in the so-called victory march where survivors run or walk a circuit to show that they have achieved the stardom of remission, more commonly called survivorship, I walked up to the folks at the entrance and simply told them that I was going to do the walk with my walker because I thought I deserved to be recognized as a survivor. They looked very uncomfortable but did not argue with me. After all, probably the last thing they wanted was to have a woman in a big back brace hobbling around their victory course and tainting their projection of the so-called survivor.

Throughout that event I was constantly amazed that no part of that huge Los Angeles style event included any recognition for the women who had metastasis and were in the throes of staying alive through treatment for the rest of their uncertain lives. How in the world does an organization like Komen leave out the thousands of women, and men, whose ranks will lose 40,000 every year and whose members never know when that fateful day will arrive.

That day lasted privately in my mind for a long time. I never even told the wonderful folks who sponsored Team Peaches and ran and raised money on my behalf because I never wanted them to feel any of the disappointment I felt with Komen. It was, after all, not a disappointment with the people who trained for the event and generously gave of themselves but for the breast cancer community who should know better and should be teaching others what survivorship means. It was the first time I realized such a disparity exists, but it made a lasting impression on me that some of us need to help define that word better. Do you define yourself as a survivor? Do you define yourself at all? How do you define others you know who are in remission and those who are living on the edge of uncertainty with metastases? Do you think we should have different labels or no labels?