Confronting a Poor Prognosis: Inflammatory Breast Cancer

Phyllis Johnson Health Guide
  • In 1998 the surgeon told me he wanted to schedule a biopsy for inflammatory breast cancer (IBC). I was too numb to ask very many questions, but when I got home, one of the first things I did was an internet search on "inflammatory breast cancer." I didn't find much, but all of what I did find was terrifying. One statistic that really hit home was "average survival of 18 months." Both my children had graduation ceremonies coming up in 15 months, and the thought that I might not live to go to Sara's college graduation or Channing's high school graduation turned me cold with fear.

     

    It turned out that the 18 months number was old, but in 1998 the best statistic to be had for IBC was a 40% five-year survival rate and a 25% ten-year rate. Unfortunately I was on the wrong side of all the prognostic factors: I was premenopausal, ER negative, and Her2neu positive. My doctors never gave me these numbers; they approached my treatment with a positive attitude even while acknowledging my situation was serious.

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    I had a good response to the Adriamycin and Cytoxan chemos the oncologist started me on, but when I had 16 positive lymph nodes at the time of my mastectomy, I saw the same fear on my doctors' faces, I had been seeing in my own mirror. Despite all the good news about survival rates for women diagnosed with Stage I breast cancer, many women aren't getting such good news. Either their early stage diagnosis is for an aggressive form of the disease, or their cancer has already gone beyond Stage I. IBC is automatically Stage IIIB, no matter how early it is caught.

     

    Here's what I've learned about dealing with bad news on the cancer front.

    First, get a consult from a specialist in your type of cancer. Make sure the people giving you bad news really know what they are talking about. When I told a doctor recently that I'm a nine-year IBC survivor, she said, "But that's always fatal." I sure am glad that she wasn't my doctor when I presented with symptoms. I've known lots of people who didn't listen to the doctors who told them to get their affairs in order because they had six months to a year left. They got another opinion, treatment, and years of good quality life.

     

    Second, understand what statistics do and do not mean. Cancer statistics are usually reported as five or ten year survival rates. To get those numbers, researchers follow a group of people for five or ten years, and then they write and publish their report. So five-year numbers are based on the treatments of more than five years ago. In my case, most IBC patients diagnosed before me hadn't been getting Taxol, which was just starting to be used in Stage III breast cancer.

     

    Statistics can never predict for one person. It's as if one hundred women in a room are told that only forty of them will still be alive in five years, but there's no way to know which forty will survive. My attitude about it all was to assume I would be one of those survivors. I knew that I might well be wrong, but why spend years being miserable if I might survive? And if my time on earth was going to be cut short, why spend what little time I had left living in fear?

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    One of the most helpful articles I read on this topic was "The Median is Not the Message" by Stephen Jay Gould, a scientist who lived 20 years after his diagnosis with a cancer that has an 8 month median survival rate. If people throw stats at you, you need to ask the date of the study, how many patients were in it, and who those patients were. If you are ER negative and most of the patients in the study were ER positive, the results really don't apply to you. As my doctors and I discussed my treatment plan, I learned to read the studies and look at the results for the subgroups of people closest to my age and tumor type. Statistics can help you decide between two treatment plans, but they can't predict your outcome.

     

    Third, surround yourself with a strong network of support. Every cancer patient needs good support, but the more aggressive the cancer, the more types of support you will probably need. When the prognosis isn't good, you hope to be in the cancer battle for the long haul. So far the long haul for me has been nine and a half years. I knew my situations was looking good when my doctors started worrying more about my cholesterol count than cancer.

Published On: October 29, 2007