One of the most valuable lessons I try to take from my yoga and meditation practice is to be comfortable with discomfort. This infographic pretty much sums up my day-to-day feelings about my cancer diagnosis. My mind is still constantly a big swirl of crazy. Sometimes I feel like an old transistor radio – I might be tuned into a certain feeling, like full-on happiness that I’m alive and well, but there’s still a lot of white noise—fear, sadness, shame, confusion—in the background. I don’t expect this to change anytime soon. My practice is to accept that sometimes life hands you things that you can’t tie up in pretty packages with pink ribbons.
Which brings me to Pinktober aka Breast Cancer Awareness Month. I’ve always had mixed feelings about Pinktober. Before I had breast cancer I’d think to myself, ‘Do women with breast cancer really feel supported by the flood of pink everywhere? How do I know which pink products are legitimately funding research? Am I supposed to do breast self-exams? Oh…I’m just supposed to be ‘aware’ of my breasts? Yeah, that’s not confusing at all.’
Now, one year post BC diagnosis, Pinktober amplifies all my swirling cancer thoughts and feelings. Jason flicked on football the other night and the screen was awash in pink wristbands, cleats, and Bose headphones. Don’t get me wrong – I love the color. (You only have to scour the internet looking for photos of my bridesmaids to see this firsthand.) And I am grateful that a powerful American institution is supporting the cause. Or at least that’s what I’m telling myself.
Underneath that, Pinktober is a reminder of a gut-wrenching, terrifying, life-altering time. Having breast cancer sucks. It’s not a fun girl-power club that I’m happy to be part of. And, even though I feel like my diagnosis gave me the biggest positive wake-up call to truly embrace life, there’s something about the spectacle of Pinktober that’s discomforting. Those of us who’ve had breast cancer don’t know if we’re truly survivors until we die of something else.
But, maybe it’s just me. I imagine there are lots of women out there who feel great about having a month devoted to their spirit, their strength, and their survivorship. I certainly don’t want to take that away from anyone.
I’m also aware that there are plenty of diseases that don’t get this amount of national attention and for that I’m grateful. In fact, my own husband thinks I’m a bit loo-loo for having anything but great feelings about this month. His response to my personal reaction – “How can awareness campaigns be anything but a good thing?!” certainly gave me pause.
So I researched. And read. And reflected. And here’s my best attempt at conveying what I wish would change about Breast Cancer Awareness Month. It’s not pretty and it’s not neat. I have rewritten it a bajillion times. It’s just my sincere attempt at opening up a sincere conversation about a complex topic.
1. For starters, I wish that we’d stop with the national campaigns that say that early detection = cure. It’s just not true. According to Fred Hutchinson Cancer Resource Center in Seattle, an estimated 20-30% of women with early stage breast cancer will develop metastatic breast cancer. Meaning that women with early stage disease can have their cancer metastasize. Period. End of story. Saying that early detection = cure completely alienates women with metastatic disease and overlooks the truth.
Another way of saying this: Most women with metastatic or advanced stage breast cancer didn’t ignore screenings. Many went through early stage treatment and their cancer progressed anyway. Or they had a very aggressive cancer that cropped up between screenings and progressed quickly.
2. Treatment has improved for many women in the early stage – I’m one of them. Due to genomic testing it was determined that chemo wouldn’t be effective for my cancer.
But I wish we had more clarity about when to start mammography screenings. Years ago it was agreed that women should get a first mammo at age 40. But recently the U.S. Preventive Services Task Force (USPSTF) changed the guideline to age 50. Despite the new recommendations, there are still reputable doctors and organizations who say that starting screening at age 50 will lead to an increase in breast cancer deaths. (Dr. Daniel Kopans, Director of Radiology at Mass General, wrote about this here.)
There are also reputable doctors and institutions who point out that even though we’ve gotten better at screening and finding more cancers, earlier, the survival rate is not improving commensurate with that (The New England Journal of Medicine
famously wrote about this in 2013.) So, yeah, if early detection “saves lives” and yet we’ve detected things earlier but are having just as many deaths, there’s something wrong with that picture.
If the top experts in this field can’t agree, what are we to do? I don’t know. But I think the only thing we can do is: Research. Talk to your doctor. If you need to, seek a second opinion. Think about what you need to do to feel at peace with this issue. And go with that.
3. I’m frustrated by how often major media outlets are publishing stories about “overtreatment” and “overdiagnosis” for one reason alone: They’re not distinguishing between Stage 0 cancer and invasive cancer. Stage 0 cancer – (also known as DCIS or LCIS) is more widely diagnosed now because of the increase in screenings since the 1980s. Treatment decisions are fraught with difficulty for doctors and patients because Stage 0 cancer is confined to the ducts or lobules and hasn’t yet invaded surrounding tissue — but it could someday. Some patients and doctors choose to be more aggressive, opting for different combinations or surgery, radiation, and hormonal therapy before the cells become invasive. But other doctors and patients are pointing out that perhaps more treatment isn’t optimal treatment. All of the treatments hold the possibility of complications, not to mention emotional fallout. Doctors like Laura Esserman at UCSF (where I was treated) are conducting studies to figure out how to best treat Stage O. And I think that’s great.
I simply wish that instead of running headlines and provocative covers (I’m looking at you Time Magazine) about the dangers of overdiagnosis when it comes to breast cancer, that outlets would make it crystal clear: We are talking about Stage 0. As far as we know right now, invasive cancer, no matter how early it’s found, always has the potential to metastasize. (There are, in fact debates that perhaps even some invasive cancers are so slow-growing they may never pose a threat, but we don’t know enough yet to know which ones.)
4. So this leads me to my last point: I wish that the campaigns talked more about knowing or assessing your personal risk. I had no idea that I could ask my doctor to assess my risk (or do it myself online). Had I done that, I would’ve found that I was in a high-risk category – both because I got my period young and because I had dense breasts (How’s that for TMI?).
Instead I toodled along like everyone else thinking – ‘Welp, I’m healthy, no one else in my family had it. I’m good!’
I’m not alone in this miscalculation – about 44% of women underestimate their risk and 45% overestimate their risk. Bottom line is 90% of us have the wrong idea of how likely we are to get breast cancer. Knowing your risk can help you make an informed decision about when to start screening.
Phew. Can you wake me up when it’s November? Just kidding. We are heading to Hawaii where I will be donning my pink bikini and my freshly minted boobs joyfully (and with all those other aforementioned feelings, I’m sure).
Here are a few more of my favorite links for navigating Pinktober. With much love to all of my sisters out there! Thanks for reading and listening.
Assess Your Risk Tool
If you find yourself going into a breast cancer panic, this online assessment tool and you may find yourself breathing easier.
The Very, Very Pink Business of Breast Cancer Awareness
The best article I’ve read about the nuances of “pink” products and where the money goes.
Four Questions to Ask Yourself Before Buying Pink Products
10 Breast Cancer Myths Debunked