When I was first diagnosed with Stage II, Grade 3 invasive ductal carcinoma in July 2012, I experienced a surprising sense of entitlement. It was strange, really, as I paid scant attention to the whole breast cancer movement and have an inherent cynicism of large self-perpetuating organizations of any kind (of which there are several in the breast cancer field). I didn’t even know that October was “Breast Cancer Awareness Month,” (Good job blowing all that money on awareness!) yet I still wanted my breast cancer perks. Were there not special programs for me now? Was I not supposed to have been given pink notebooks and pink notepads and pink ribbon pins and breast cancer pens? Was I not automatically enrolled in a local support group?
I was ashamed of this line of thinking. How could I have been swept up into a pink slumber party when I would otherwise ignore this kind of nonsense? I’d just received some pretty sobering news, yet my overriding thought was getting pink disease swag. Maybe, I thought, I was just in denial and trying to find the least offensive way toward acceptance of my diagnosis. I wanted to be OK, so I just assumed that I would have surgery, chemotherapy, radiation, and then I would re-enter the world. I set myself a timetable of 18 months to move through the disease to the point where I could be a survivor. That was the way it was supposed to work, right? It was a rite of passage, I told myself. I would see cancer as a blessing, walk all over the country raising awareness (because you can’t have too much), and give other women pink shiny things.
Three weeks into my breast cancer diagnosis I learned that the cancer had metastasized. I knew then that, far from my optimistic 18 month timetable, breast cancer would now always be with me. Breast cancer would kill me.
I realized with some embarrassment that I had allowed myself to be manipulated by a persistent and insidious message of commercialized breast cancer survival. But the worst part about it? There was no room in that message for me or others like me who are living with and dying from metastatic disease. Even in the month of October, where every single day is devoted to breast cancer awareness, one could only talk about metastasis for one day. So on Friday October the 13th we get to talk about death? Nice.
Pink ribbon breast cancer marketing has trivialized breast cancer, and metastatic disease is breast cancer’s inconvenient truth that doesn’t fit into the cheerful pink narrative. Of those who have ever had or have breast cancer, 30% of them will develop metastatic disease. 100% of people who die from breast cancer die from metastatic disease, so you’d think it’d be a high priority. Yet despite this number, only 2-3% of funding goes to research that focuses solely on metastasis. For all of the success of the breast cancer movement over the last thirty years, those with metastatic disease are conspicuously absent.
One organization, METAvivor, has made it their “raison d’être” to encourage 30% of funds raised in the name of breast cancer to go towards metastatic research, to match the 30% of people with metastasis. METAvivor’s 2012 campaign “The Elephant in the Pink Room” rightly named metastatic disease as the proverbial “elephant in the room” when it comes to breast cancer. METAvivor has long encouraged the discussion of metastatic breast cancer in all discussions of this disease because with awareness and discussion come the needed funds for research. METAvivor’s message accompanying the “Elephant in the Pink Room” campaign was simple and clear: Don’t Ignore Stage IV.
So you can imagine my own surprise and the surprise of many people when we found out last month that the national department retail chain, Kohl’s, in conjunction with Susan G. Komen (no longer “For the Cure”) was running a fundraising campaign calling breast cancer “The (Pink) Elephant in the Room.” Complete with a pink striped elephant (no teddy bears here!) and happy fonts, Kohls’ campaign implored us, “Don’t Ignore It. Breast cancer is the (pink) elephant in the room and we need to talk about it” with nary a mention of metastatic disease. Komen, in this case, continued its practice of creating “breast cancer awareness” built on the backs of individuals with metastatic disease. Only this time they did it by coopting the campaign of an organization that donates 100% of the funds it raises to metastatic research. Two wrongs do not make a right. They never do.
Breast cancer has been trivialized, sexualized, and feminized to the extent that “cancer” is all but removed from its identity. In the pink zeitgeist, we get to live beyond five years as a survivor or we are “remembered.” In a very cruel and surreal sense, in the world of pink those of us with metastatic disease are worth more dead than we are alive.
By Scorchy Barrington. Scorchy is a breast cancer advocate who blogs at The Sarcastic Boob.