October is officially dedicated to raising awareness of breast cancer.  Bright pink athletic gear, pink-tinted yogurt containers, and pink-lit buildings broadcast support for those living with breast cancer and those attempting to cure it.  As with any good campaign, there are also catchy slogans accompanying the pinking of our surroundings.  “Big or Small, Save Them All” is just one of the ditties designed to get us thinking about a disease that killed an estimated 40,000 persons last year.

Since being diagnosed with breast cancer almost four years ago, I’ve had a complicated relationship with popular ways of framing of the fight against breast cancer.  Leaving the critiques of the movement’s pink hew to others* I’m interested in how raising awareness has only just started to include information about the most aggressive forms of breast cancer and the stories that accompany them.

By now most of us know something about what I call the breast cancer drill: You find a lump in your breast; you get a mammogram, you’re told the awful news of having breast cancer; you suffer through the trauma of surgery, chemo, and radiation.  Then best case scenario you move into remission. 

This familiarity with the breast cancer drill was at the heart of my disorientation with my own breast cancer diagnosis.  My back broke—not once, but twice—and a biopsy on my back discovered I had . . . stage IV breast cancer? 

Come again?

I’m a woman with breast cancer.  The problem is that my path to diagnosis and treatment bears little resemblance to the breast cancer drill many of us know so well.  I found no lump; the mammograms I had revealed no tumor; I had no breast surgery, no chemo that led to loss of hair.  What does it mean to have breast cancer in a way that differs so drastically from the dominant breast cancer narrative?

Because the cancer in my breast had metasticized to the bones, “saving the breasts (big or small)” was initially a non-issue.  The disinterest in the cancer in my breast was unnerving for all of us well acquainted with the drill.  I was put on the anti-estrogen drug.  I began two years of monthly treatments of the osteoporosis drug.  I began radiation—not on the breast but on my spine, hip, and pelvis, all places to which the cancer had metasticized.  I had surgery on my back to repair the vertebra destroyed by the cancer.

All the treatment I underwent was for the express purpose of stopping the cancer from destroying more of my bones (or moving into my organs).  And thus far I’ve been incredibly fortunate: the multiple medical interventions worked as they ideally are supposed to and I’ve been in remission for much of the past three years.

But there’s more to this story.  There is no cure for metastatic breast cancer.  Oncologists hope that one day they’ll be able to treat metastatic breast cancer as a chronic condition, like diabetes.  But today the statistics are still grim: according to the May 2012 issue of the journal Nature, even though there’s been “vast improvement” on survival rates for non-metastatic (“local”) breast cancers, the journal reports that survival rates for metastatic breast cancer patients remain “dismal,” with only 22% living more than ten years with the disease.

This is one of the first Octobers when I’ve seen breast cancer awareness reach beyond the more familiar stories (which are, of course, very important) to the much-less-familiar stories of metastatic breast cancer.  At least two local news stations have interviewed women with metastatic breast cancer this month.  In one interview, the women noted how little connection they see between the pink-themed focus on breast cancer and their own journey with the disease. 

I can relate.  The pink makes me think about breasts.  Those of us with metastatic breast cancer are often thinking about our bones (and our organs) rather than our breasts.  Metastatic cancer is “Bad to the Bone.”  In the name of raising more awareness of all forms of breast cancer, perhaps it’s time to add a few new slogans to the agenda.  Then we might see that saving bones is part of the quest to contain breast cancer, too.     

*to cite just two examples of critiques of the pinking of breast cancer awareness, see Barbara Ehrenreich’s searing “Welcome to Cancerland,” or  Hamline University alum and 29-year-old cancer “thriver” Erika Lade’s Huffington Post blog, “Breast CancerAwareness: Why does my Cancer Have a Logo?”

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