So it’s breast cancer awareness month, or Pinktober, if you will. I hate awareness campaigns. I really do. I’m not sure what the point is. This October has been particularly unsettling. There have been so many articles, so many links shared via social media, about the pros and cons and timing of mammograms, the “over-diagnosis and treatment” of breast cancer (particularly as it relates to DCIS), and the reality of survival rates.
I shared one of these stories, a piece that ran in Mother Jones, on my FB feed. You can find the story here. It’s sobering. Well-reported, well-written, it really makes you wonder. And while I’m sure part of the intent is to make us angry, the truth is, it only made me sad.
When I was first given my diagnosis, my primary care doctor told me that my cancer was DCIS, which for lack of a better definition is kind of a “good” cancer to have. (In fact, new thinking questions whether DCIS should even be called cancer.) It’s non-invasive, it hasn’t spread, and it responds beautifully to treatment. But after all the follow up testing, I learned that only some of my cancer was DCIS. The truth is, my cancer was kind of three things in one. A mix of invasive ductal carcinoma (or IDC), DCIS and ADH. DCIS and ADH are not scary. ADH is, in fact, pre-cancerous cells. DCIS is curable and has an excellent (nearly 100%) survival rate. But it was the invasive ductal carcinoma, poorly differentiated, which dictated my treatment plan. That and the fact that my cancer was found in at least three locations in my left breast. That said, I have been one of the lucky ones. My cancer was ER+, which means it can be treated post-surgically with anti-hormone therapy, and — even luckier — genetic testing of my tumors revealed that chemo would not improve my longterm survival odds.
So that’s me. I have no doubt that I chose the right treatment plan, that a double mastectomy and anti-hormone therapy were/are my best shot at survival. But good grief, the information out there now, the stories blasting the medical profession for aggressively treating cancers that may never become life-threatening… It upsets me. I have friends who were diagnosed with DCIS and opted for lumpectomies and radiation, or even mastectomies. I wonder what they are going through right now? Do they feel mislead? Are they angry?
Added to all this is my general distrust of the whole “awareness” mentality, my inability to find support from things as stupid as “National No Bra Day,” and pink ribbons on bottles of soda. The amount of “fun” activities and events to raise awareness of breast cancer is at an all-time high. But what exactly are these things making me aware of? When’s the last time you saw the real face of breast cancer? What I see when I type those words is my beautiful cousin Tina’s face, just a few weeks before she died at 48 years old, swollen and unrecognizable from the toxicity of the drugs that couldn’t save her. I see my own scars, my body forever altered and changed.
We are so schooled in awareness that we’ve lost sight of what really matters. The media feeds us survivor stories where the underlying and unwritten message is: see how great all these happy women with breast cancer are doing!! They’ve thrown their bras away!! They are wearing pink!! Look at those smiles!!
Cancer treatments, particularly those for breast cancer, have come so far in recent years, but not far enough. While doctors know so much more about how breast cancers behave, how their genetic makeup can dictate treatment options, there is still a great deal of confusion and misinformation out there. We can’t lose sight of that. There’s nothing about this diagnosis that is a gift you can tie up with a pink ribbon. To have breast cancer is to be forever changed, sometimes in ways that can’t be explained or defined, or even shared with those we love.
This morning I sat in the exam room at my oncologist’s office thinking a great big “what the hell” about all of it. I mean, I had breast cancer. Just saying or writing those words still fills me with dread. And despite what my well-meaning primary care doctor said all those months ago — most likely in an effort to reassure me — there is no such thing as “the good kind” of cancer. You live with the fear, you live with the disease, you live with the aftermath. And it’s messy — all of it.
One of the real problems with awareness campaigns is that we hop on the bandwagon for a set amount of time and we think we’ve done our part. We feel good, we donate, we volunteer, but it’s all so damn whitewashed. I’m not sure what the answer is, but I know we have a long way to go. We have to provide more and better support for survivors, and we have to fund whatever research is needed to clear up the confusion about treatment options. Because do we really want to make women feel bad about their choices? Do we really want to tell someone that maybe she didn’t need that surgery after all? We have to do better than that.
We’ve come so far. But we really have such a long way to go. Maybe that’s really what Pinktober is all about — or at least what it’s supposed to be about.