Metastatic Breast Cancer–the Ugly Stepsister

Before I was diagnosed with metastatic breast cancer (MBC), I confess that I didn’t know much about it. I assumed, as many probably do, that Stage IV breast cancer occurred primarily among people who hadn’t caught the disease early.   There was the very public example of Elizabeth Edwards, whose initial tumor was a whopping 9 centimeters, and who then faced a metastatic recurrence—and eventual death—a few years later.   And, like many, I suppose I had drunk a bit of the pink Koolade that “early detection” is key—that lives are saved when women get mammograms, their tumors are small and haven’t spread, etc. Since I fell into this category, I certainly thought—and hoped—that I was among them.

The facts are quite different. The incidence of de novo Stage IV, or metastatic, breast cancer is very small, less than 10%. The remainder of cases come from women like myself, many of whom got regular mammograms, were diagnosed with early stage disease and then had a recurrence. (It should be noted that there is NO effective screening tool for women under 40—mammograms have limited utility in younger women who have denser breast tissue than their older counterparts). Up to 30% of women with early stage disease, in fact, will go on to develop metastatic cancer, sometimes many years later—and this includes women who had Stage 1 or even Stage 0.    Because so little money goes into research for a cure (only 7% of research dollars in the U.S. and U.K. go to metastatic disease, the only kind that kills) scientists simply do not understand yet why—despite treatment– the cancer lays dormant, sometimes for a decade or more, and then recurs elsewhere in the body. The bottom line, scary as it is for women who have had early stage disease, is that at this time, you simply cannot know if you are part of the 70% majority or the 30% minority.

Statistically, we don’t even know how many women and men are living with metastatic breast cancer, because data is only tracked on the original diagnosis. Estimates put the number in the United States at about 150,000, but when a metastatic breast cancer patient dies, their original diagnosis—in my case Stage IIA—follows them.

Because of all the hype about mammograms and early detection, the focus especially in the United States—and more importantly, the funding– over the last thirty or more years has been on awareness and on ensuring that women get screened. This is not to say that mammograms and self exams do not have their place—they do. But to imply that they have improved survival is simply false. The same number of women (and a few men) are still dying of this disease as they did 40 years ago—40,000 per year, or 108 every single day.

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Partly for this reason, you will not find many fans of the Komen Foundation, the ultimate pink juggernaut, among those who have metastatic disease. Despite the fact that Susan Komen herself died of metastatic breast cancer, the cruel myth has been perpetrated by the Komen Foundation that survival rests in the hands of the patient, through early detection. According to one Komen ad, “What’s the key to surviving breast cancer? It’s you.”—the clear implication being that if you get metastatic disease, it’s your own fault.    As noted above, fewer than 10% of women are initially diagnosed with Stage IV (which has a 23% five year survival rate), the rest—assuming they are of an age when a mammogram is even a useful tool—may still face a recurrence even if they have been diligent about screening.  Komen has generally minimized any publicity of Stage IV or metastatic disease patients during Breast Cancer Awareness month, instead choosing to focus on the “feel good” message of early detection and cure, replete with dogs dressed in pink bras.

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A recent report on the global status of MBC (Advanced) concludes that research on metastatic breast cancer has not kept pace with advances in other forms of cancer, such as melanoma and lung cancer.   The report recommends a much more aggressive approach to investigating the genomic underpinnings and improvement of outcomes in metastatic disease.  Organizations such as Metavivor and the Breast Cancer Research Foundation spend the bulk of their donations on research into metastatic disease, and are, in my opinion, a much better investment than Komen and their pink dogs with bras.  If this is a cause that speaks to you, I encourage you to check them out.

6 thoughts on “Metastatic Breast Cancer–the Ugly Stepsister

  1. This is a very well-written and clarifying essay on the sometimes unhelpful hype of the Komen foundation and the lack of research on metastatic breast cancer. Thank you very much for making the effort to write this very informative piece.

    Liked by 1 person

  2. Thanks for collecting and sharing all this info. It’s frightening but better to know. I am an information girl and unfortunately I get very little from the docs. I will check into the organizations you mentioned.

    Liked by 1 person

  3. I applaud your post . It is so important to bring this information to other women . The number of young women with metastatic cancer is increasing . We need to share this information and all actively support increased research in metastatic cancer .

    Liked by 1 person

  4. Until we are faced with the statistics and details on metastatic breast cancer it is not part of our awareness. Organizations like Susan Komen and Dr. Susan Love Research Foundation (based on the west coast) continue to push that early detection is what really matters. Thank you for doing this research and sharing it with us. It is critically important that we all do our part to educate as many as possible and support increased research in metastatic cancer.

    Like

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