[Debbie L.]

My very rough draft response, comments welcomed. Sorry it is so long, but it's just not a short nor simple topic:

I wish we had made enough progress in stopping breast cancer that we could be justified in celebrating about it for a whole month. But we have not made that progress. Despite years of intense research and billions of dollars spent, we have made barely a dent in the number of women and men who die each year of breast cancer.

Back when pink ribbons and the designation of October as “Breast Cancer Awareness Month” got started, there probably WAS a need to be sure women knew the current recommendations for breast health, and felt safe to seek care. There probably WAS a need to make breast cancer less of a secret disease and one that people were able talk about more comfortably.

I’ve never been sure what exactly was meant by “awareness”, but over the years it’s been closely linked to that other tenacious phrase: “early” detection. Despite more information every year that tells us that the behavior of an individual's cancer has little to do with the size at detection and much more to do with the biology of an individual’s tumor cells, we cling to that myth that every woman who does the recommended surveillance will save her life because her cancer will be detected "early".

Yet study after study questions that there is ANY benefit to mammography, in terms of saving lives. Even the studies that do show benefit show such a small benefit that it’s amazing to me that we continue to worship mammography as the answer. It’s what we have, we should probably continue to use it, but it is NOT the answer. Think about it -- most women who die of breast cancer had their cancer detected by mammography or some form of self-exam.

So what are we trying to accomplish in October? Women are aware, and have been for a LONG time now. Yet instead of scaling back or changing the message a bit, this October thing just grows and grows. It’s an industry now. Under the guise of promoting “awareness”, there is a lot of money being made in October. We could argue about which pink promos actually result in some benefit to the state of breast cancer, or to individuals with breast cancer — and which ones merely increase profits for the company doing the promotion. BCA (Breast Cancer Action) has information about that, if you’re interested.

But setting aside the issues of awareness (we have it, we don’t need any more of it) and fundraising (beware the pink fried chicken) -- what bothers me the most about Breast Cancer Industry Month is the tone. The tone is festive and celebratory. There is nothing festive about breast cancer. Treatment is not festive. The fear that goes along with diagnosis is not festive. Recurrence, which means living the rest of one's life with breast cancer, is definitely not festive. The financial burdens that accompany treatment are not festive. The implications to family and loved ones are not festive. Death is not festive.

And celebratory? Yes, there have been some advances and a few of us owe our lives to those advances. That we cannot know which ones of us owe that debt, until we die of something not-breast-cancer, is just one of the illustrations of how little we know and how far we have to go before it will be time to celebrate.

I’ve been paying attention to the science of breast cancer for over 10 years now. In the beginning, I was amazed and encouraged by the scope of the work to figure out breast cancer — so many brilliant minds, dedicated to finding the answers. I was heartened each time I’d read of an advance, even when the advance was in a cell culture in a lab or in one of the many millions of cured mice. Over the years, my enthusiasm has waned. Even when the advances are in humans, they are incremental advances, and ones that come at a cost (both in terms of toxicities and dollars). Each new understanding, although interesting — only opens the door to more questions. And as we tunnel down into each new question, the investigations become more complex and the path narrows. Each individual brilliant mind is losing sight of the broader perspective, and there is much redundancy (waste) of efforts because there is no coordination of those efforts.

I believe that it’s time to change the focus, and the conversation. I am no longer satisfied with more of the same. We have too little to show for our years of effort, in terms of lives saved. It’s time to take a closer look at the processes of research, and to find ways to do it differently -- so that it translates not just into knowing more about breast cancer, but so that it translates into saving lives.

Over my years of breast cancer advocacy, I’ve tunneled-down a bit myself. I'm now doing mostly research advocacy. Over these years, I’ve often asked myself hard questions, about whether what I’m doing is making any difference at all. I’ve asked myself if what I’m doing is not simply a recreation for me, serving no real purpose except to (perhaps falsely) bolster my self-satisfaction.

I’m still asking those questions, but I’ve found a place where I can be sure to make a difference, and I’m jumping wholeheartedly on board that project. It’s the National Breast Cancer Coalition’s “Deadline 2020 Campaign”. http://www.breastcancerdeadline2020.org/ It’s about changing the conversation, and the focus. There is more to it than could be summarized in a few sentences. NBCC is holding summits and catalyst meetings on the neglected topics of breast cancer prevention, and prevention of metastasis — and they are developing strategic plans that will coordinate and focus research on these topics. On the policy front, NBCC’s #1 priority for 2011 is the “Accelerating the End of Breast Cancer Act” : http://tinyurl.com/3bjk4a4

Are you with us?

Debbie Laxague