Breast Cancer Awareness Month Has Lost the Plot
Trapped in that narrow PET scan tube, I was repeatedly told to stay still each time I said I felt nauseous. I must just be hungry or desperate for caffeine, I reasoned, as the procedure requires an empty stomach. But in a moment that somehow seemed to happen in slow motion and yet had way too much momentum to stop, I threw up all over the tube and, gravity bonus, my shirt.
As I hastily cleaned myself up—shoutout to the tech for finally agreeing to pause once I was covered in vomit—I couldn’t help but wonder why no one had cared to listen to me. The bathroom mirror reflected a version of myself that I barely recognized. I looked disheveled and defeated, yes, but also wildly different from the images of breast cancer I was so used to seeing everywhere prior to my own initial diagnosis, in December 2015.
Relative to many other diseases, breast cancer gets surprisingly good PR, in part because of how many of us are lucky enough to survive it, and in part because of how we are then portrayed in the countless media images promoting all sorts of walks and talks and parades. Honestly, I'm impressed you’re even reading this right now, because these peppy images are even more saturated in October, during Breast Cancer Awareness Month. So much so that it's all too easy to think, “Ah, another breast cancer story. We’ve got that handled by now, don’t we?”
The fact of the matter is: we’re far from it. And when messaging only focuses on early detection and those who’ve been cured, it leaves out the considerable challenges that exist between diagnosis and “done” (a word many of us don’t use or feel, even if we are technically cured). Beyond that, language about recurrence, metastasis (when cancer cells spread), and death is often relegated to a figurative footnote almost no one reads. Why worry anyone about late-stage, after all, when we can be vigilant, catch it early, and live happily ever after? But by ignoring the less-than-pleasant realities of breast cancer in favor of general "awareness," we’re skewing the story. And it can leave anyone dealing with their diagnoses wondering why things are so much harder for them than they look on TV.
In hindsight, I have to ask myself if I was part of the problem. A few months after I finished my early-stage treatment, in the summer of 2016, I uploaded a photo to social media that can only be described as a bald glamour shot. After working so hard to keep my breast cancer diagnosis off social media, I was finally ready to tell the world. I sat there, overthinking the caption, trying to get the perfect mix of strength, vulnerability, and Brene Brown. Shortly after hitting “share,” the love began to pour in.
While it hardly went viral, I used to joke that no matter what else I did or shared in the future, it would never get as many likes or comments as cancer did.
While the words in my caption had been authentic, they also leaned super positive on the heels of a trying year. Many of the comments used the word “inspiring,” something you often see paired with the term “breast cancer” on talk shows, message boards, and magazine pages. And I get it. As humans, we love hope. We want to see all the amazing things people can do in the wake of substantial challenges, particularly in a world increasingly built on sound bites and short but sweet news segments. Informing women about advances in cold capping and sharing surrogacy stories with happy endings makes for good TV, after all, especially in a world that can often feel so dark.
But focusing so hard on the positives, in this case, seems to have obscured the truth. Which is, for the many folks living through this diagnosis or supporting a friend through it, the stories we’ve seen to raise awareness aren't always "inspiring," they can be downright draining and frustrating. Trust me, we’re not helping anyone by censoring what breast cancer really looks like.
So, I’ll start. Let’s get into the realities of implants, shall we? In my case, the reconstructed-on-Park-Avenue breasts that look natural almost never feel that way (my chest is chilly, like, all the time). My implants have also been recalled by the FDA (yep, really) because they’re linked to a secondary cancer. Nice! And even if they hadn’t been, I’d still need to surgically swap them out every ten years or so, a detail I somehow missed as I glanced through lookbooks at the plastic surgeon’s office in my post-diagnosis fog.
Beyond breasts, survivors can experience overnight menopause, infertility, lingering chemo brain, and more. There’s also an emotional toll, which often intensifies over time. I, personally, felt my most anxious weeks after my final round of chemo, and one of my nurses told me that most patients feel the same way. Many of us spiral when active treatment ends—even though most would assume we’d be thrilled to be finished—because we stop seeing our doctors as often, and start to worry about recurrence. Why does no one ever warn us about that?
Perhaps what pains me the most, though, is that, to a certain extent, breast cancer looks the same as it has for decades, despite having such a great marketing team. It’s not all breakthroughs, and we’re not as close to a cure as you may have been led to believe. Take it from me: My chemo treatment, which I began in 2016, was almost identical to the treatment my mom received almost three decades before I did, in 1990.
Unfortunately, the cocktail that thankfully cured her did not do the same for me, despite doctors catching it early. I am one of the approximately 30 percent of early-stage survivors who, for reasons not fully known, end up metastatic, with Stage IV cancer. I was diagnosed with metastatic breast cancer (MBC) in April 2018. But I am also one of the lucky ones: I am six-and-a-half years into my MBC journey, while only 31 percent of us live 5+ years beyond diagnosis.
In this country alone, 42,000 people die from MBC each year. That’s 115 deaths per day, which, a friend likes to point out, is akin to a medium-sized plane crash daily. But despite those startling numbers, only a tiny percentage of funds raised for breast cancer are actually dedicated to Stage IV research.
Perhaps because, while so many of us wait for a cure, the majority of the population still sees breast cancer through rose-colored glasses.
It’s something I think about a lot as I return for my regular PET scans, in that same room that, years later, I have learned to enter with more confidence, even if my fear doesn’t ever completely disappear. I have come to realize—over time and by talking to the women who have walked these steps beside me—that there can be a third lane in breast cancer, one between Pollyanna pink and terminally ill, and I have grown to embrace the fact that it’s mine. Things can be messy sometimes, but they’re easier when I arrive prepared. Physically and mentally. Case in point: I may not have thrown up in a scan in years, but I still bring an extra shirt just in case.
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