Breast Cancer: The Divide Between Awareness and Progress

This past Sunday, New York Times Magazine had an insightful cover story entitled “Our Feel-Good War on Breast Cancer” by Peggy Orenstein. The title jumped out at me for very personal reasons: my best friend is an Inflammatory Breast Cancer (IBC) survivor. When she was first diagnosed in 2009 (at the age of 34), I saw the pink ribbon as a symbol of hope and solidarity. Times have changed a bit.

From 2009 to the present, my friend had chemo, a double masectomy, some lymph nodes removed, radiation, reconstructive surgery where they used muscles from her back to create breasts, a part of her lung removed when her cancer metastasized, and then a hysterectomy because they found estrogen in the tumor in her lung and it confirmed to the doctors that she can’t have estrogen in her body if she wants to have any shot of keeping the cancer away. During all of this, Races for the Cure came and went, a local TV station threw annual telethons where they gave out pink canvas bags emblazoned with their station’s pinked-up logo to donors (costing $6 for shipping, by the way), and pink-infused football games trampled on in all their pink-cleated glory. All the while, no new information, or at times any information was really given to the public about breast cancer. Good luck if you wanted to hear even a mention about IBC, which happens to be among the most lethal forms of breast cancer. I began to wonder when the hell these multi-million dollar outfits were going to actually educate the public on breast cancer beyond Mammographies!Pink!Self-Exam!GOPINK! Pink!PinketyPinkPinkPinkAware!  Behind all of this pink shit, you start to wonder if “awareness” and education are two completely different concepts. For this reason, Peggy Orenstein’s article piqued my interest.

One of the most interesting aspects of Orenstein’s article is her criticism of the “awareness” campaign’s predominant focus on mammograms. After her cancer was detected on her first mammogram, Orenstein was a loud and vocal supporter of them; why is she changing her tune now? Through her research, she came across studies that indicated that women were often over-diagnosed and received unnecessary treatment, exposing them to harmful chemicals and unnecessary procedures. She found that the push for mammograms barely made a scratch on the statistics for women with lethal forms of breast cancer, and for certain age ranges, the mortality rates haven’t changed at all since mammograms became widely used. She points out an interesting fact that is often lost in the messaging: breast cancer alone does not kill you. It kills when it metastasizes to other organs, and there is no evidence linking the size or age of a tumor to when cancer metastasizes, challenging the idea that early detection prevents metastasis.

Now this isn’t to say that we all need to stop doing our self-examinations and just give up on supporting the cause; I also don’t want to discount what Susan G. Komen and other breast cancer charities have done to destigmatize breast cancer. The danger of their overfocus on Pink Awareness is it not only promotes a message that conflicts from multiple scientific findings, it also gets in the way of progress by putting the Brand of Breast Cancer Awareness before education, research and development. In all the years of pink cleats and pink yogurt lids, what exactly have we learned through this campaign? Through this messaging, who has learned that IBC usually doesn’t show up in the form of lumps, but rather a change of texture to your skin? Or who has learned that there are four genetically distinct breast cancers, and that they all respond differently to treatment? And how much of this money raised has gone to research to find a cure? Orenstein reports that the most recent financials available for Susan G Komen show that 16% of the money raised in 2011 went towards research. While that amount is no small potatoes when looking at how much they bring in, it seems to be a remarkably low percentage for a company who sued to trademark “For the Cure.”

As Susan G. Komen looks to find its footing after a year filled with abysmal PR, they find themselves standing in front of an excellent opportunity to take the next progressive leap for the cure: to step away from the information-free ubiquitous wasteland of pink branding, and replace it with a ubiquitous voice and funding source for research and champion for those fighting breast cancer – not just those who have fought and survived, but those who are fighting and struggling to win the battle – a group Orenstein notes is absent from the awareness campaigns.

This last point is important to me. Through these years, I saw my friend fight for her life both physically and mentally. I watched her dig deep and survive – surviving in a way that transcends any illness. This is another thing they don’t tell you about on the yogurt lids: they don’t tell people how hard it is to emotionally recover from cancer. I’ve seen my friend find herself in a very dark place, and I’ve seen her claw her way out of it like the fierce badass mofo she is. It’s hard work to do that, but damn it, she’s done it. Because she’s my badass friend. She is one of many fighters who have had IBC or metastasized cancer and it’s time for us to fight for them and get the breast cancer awareness back on track.

Sources and recommended further reading:
Our Feel-Good War on Breast Cancer
The National Cancer Institute Fact Sheet on Inflammatory Breast Cancer
NEJM: Effect of Three Decades of Screening Mammography on Breast Cancer Incidence