Not to dismiss in any way the science behind it or the work of those who compiled it, but my pathology report might as well have been required reading in my high school English Literature class. I can visualize my teenage self, poring over its language, structure, and form, trying to discern “what it’s really saying,” because I know there will definitely be a question on the final exam about how language, structure, and form contribute to overall meaning. After hours of looking up words, under-lining key vocabulary, and annotating my way through the gross description and microscopic diagnosis, I would no doubt conclude – and my teacher would verify – that the Big Questions remain unanswered. Further, I would resign myself to the frustrating knowledge that no matter how many times we dissect the contents of my pathology report, no matter how many ways we ask the questions, we still don’t know and, we may not ever know, given our progress in the “war” against it, why I got cancer, when I got cancer, or if it will rear its head again. One of my physicians, whom I would trust with my life, tells me all I had to do was be 1 in 8 women. That’s all we really know.
Not unlike the great teachers I’ve known both personally and professionally, my surgeon knows her stuff, has patience to spare, and responds to every one of my questions as if it is brilliant and being asked for the first time. She reiterates that I did nothing wrong; I am just the 1 out of every 8 women. When I ask her to elaborate on the difference between her pronouncement after surgery that “the cancer is gone” and “the cancer is cured,” she tells me she is reluctant to use the word “cured.” Yes, with the mastectomy, she removed all the cancer – at least all that they could detect – but she cautions me that, even 5 years from now, rather than “cured” a more likely declaration will be “no evidence of disease (NED).” By the numbers, and I cannot pretend to know the mathematical process that produced these numbers, it seems, in my case, there is a 13% chance of the latter. I would prefer 0% but wouldn’t we all? I understand her need to be circumspect. Just because they can find no cancer doesn’t mean it isn’t there, as was the case with the malignant tumor in my breast that defied detection by three mammograms. NED is essentially “remission,” which I thought was a more definite state as in “completely disappeared.” But, in more ways than one, I find remission is a bit more like eviction. Remission can be temporary or permanent, she tells me. So basically, NED does not mean that the cancer has been cured. Wait. I already know there is no cure for breast cancer. Why is that exactly? Why is there no cure? Why do we not know the cause or causes? Why do we not know how to prevent it? It’s beginning to feel a bit like we’ve settled for the status quo, settled for pathology reports that lend themselves to more questions. As if we have settled for possible links and probabilities, rather than demanding – really demanding – iron-clad preventive measures and root causes.
Like any good student, I could read beyond the recommended books on the syllabus. I have done a little of that this weekend, and what I have found has stopped me in my tracks. I wish everyone could and would read the National Breast Cancer Coalition’s Baseline Status Report: Ending Breast Cancer and subsequently demand an entirely different approach to breast cancer. Our collective awareness about it is simply not enough. It is with some shame that I come so late to this critical conversation. Until my own diagnosis, breast cancer was something that happened to other women. Now I know better, and I know more:
- If we keep doing what we have always done, National Breast Cancer Coalition estimates that by 2030 – when my little girl will be 31 years old – 747,802 women worldwide will die each year from breast cancer.
- NBCC reports that in 1991 in the United States of America, 119 women died of breast cancer EVERY DAY. In 2010, that number was 110. Such a small, small step. How can we be satisfied with such minimal progress?
- In 1975, years after we had already boldly gone to the moon – the moon - the odds of a woman developing cancer in her lifetime was about 1 in 11. Today it is 1 in 8. Again, that’s just not good enough.
- Not all breast cancers are the same. Not all tumors behave the same way. Not all women are the same. So many women with breast cancer, however, find themselves subjected to the same treatment – a one-size-fits-all dictum of surgery, radiation, chemotherapy, and/or hormonal treatment (not necessarily in that order).
- Men get breast cancer too. In fact, 390 men – in the United States alone – die from breast cancer every year. It gives me pause that darting across my mind, even as I write, is an image of a man clad in a Susan G. Komen’s “Real Men Wear Pink Too” T-shirts.
- In America, where even the White House and other famous structures have been festooned with giant pink ribbons, it is abundantly clear that Nancy Brinker and the organization that bears the name of her dead sister have succeeded in delivering what she calls “conventional messages in unconventional ways in unexpected environments.” What would Susan G. Komen say if she were alive today? If she were able to peruse the report from the National Breast Cancer Coalition which asserts that the emphasis on early detection through self-exams and mammograms has resulted not only in an increase in diagnosis of DCIS but an over-diagnosis and over-treatment. Chillingly, this has not brought with it a commensurate decrease in breast cancer mortality.
- Hope is not synonymous with cure although industry marketing has, at times, led me to believe that it is. What gives me hope, however, is the National Breast Cancer Coalition’s goal to “close its doors by the end of the decade because the mission to end breast cancer has been accomplished.”
With the National Breast Cancer Coalition, I dare to believe that when we ring in the New Year on January 1, 2020, we will do so with the knowledge that our children and theirs will live with a little more contentment, a little more confidence, because they will know what causes breast cancer and what prevents it. They will know why so many people with so much knowledge and power to do better, didn’t. They will understand why we settled for such small steps instead of the giant leaps that billions of dollars should bring. And, they will not allow that to happen again.