I haven’t read a post about breast cancer that has resonated with me like this one: How statistics guided me through life, death and ‘The Price Is Right’. It’s funny and is filled with truth of what a breast cancer diagnosis and subsequent myriad of decision making looks like.
Based on pure stats, I should have never been diagnosed with breast cancer. I have a healthy diet. I am a lifelong runner. I have a low BMI. I breastfed (albeit, not long). I never did drugs. I’m careful about anything I put in my body. I avoid pesticides. I started my periods late (meaning lower estrogen load). I am an extremely moderate drinker (I know…don’t let facebook posts fool you!). I have a happy disposition and I blahblahblah. Doesn’t matter, does it. We know breast cancer can still happen despite the stats; I’m living proof.
In my first doc appointment after diagnosis, I got the best advice to start me on a road I never thought I’d take: Don’t let anyone tell you why you have breast cancer. If the top researchers in the world don’t know, the Internet doesn’t either. I couldn’t have gotten a stronger, more reassuring start to balance those who thought they knew exactly why I was diagnosed.
Long ago, one of my docs dubbed me a 1% when it comes to my medical history. I am a regular, but not always, outlier when observing the bell curve of statistics. Some times that means when given a drug, I fall in the end of experiencing the lesser experienced side-effects. Yay, me!
Since that dubbing, I have practiced a lifelong policy of rarely using prescriptions or OTCs. I thought I was doing myself a favor, by being extra careful. But, it didn’t matter when it came to breast cancer. Based on my health habits and medical history, my risk this year was/is .09%. My docs, without exception, were shocked that I indeed had (no sign of it anymore!) breast cancer with such low odds, but it happens and no one knows why.
.09%, y’all. GOSH, breast cancer…why you gotta be so mean!
Elisa Long’s article had me laughing and crying in all the YESES! Her experience of getting bad bad news (triple negative breast cancer), was then buoyed by beating the stats for achieving PCR (pathological complete response). For me, the upside of being diagnosed with triple positive breast cancer (including Her2, which is not as aggressive as a triple-negative, but right up there), was that I too, fell into the lower odds of achieving PCR, which, if achieved, would up my odds for survival and lower my risk of recurrence significantly. It’s a response all oncologists pray for, but mine was forthcoming in saying that the odds weren’t in my favor.
May the odds be ever in your favor!
Oh, hai. Prior to surgery, my surgeon and oncologist believed I. ACHIEVED. PCR! After surgery, it was confirmed in the final pathology. I beat the odds again. This time it felt like I won the Power Ball lottery…cause in the world of medical stats, I did.
When you get to the part in Elisa’s post about decision fatigue, know she’s right on the money. The first thing you learn when diagnosed is that there are thousands of pages of research available to you. There are conflicting results in studies. The protocols for treatment can change quickly (if you were diagnosed in the 70s with breast cancer, you most likely had a gruesome mastectomy with loads of lymph nodes taken. Today you most always get a choice in treatment). The decisions you are required to make in a compressed time frame is anxiety producing. HURRY HURRY! NOW NOW! THIS OR THAT? Followed by: You sure that’s what you want to do? Um, no. I’ve never done this before. Why don’t you tell me what you would do. Which of course they can’t because after all this is your life, not your doc’s. You get to make the harrowing decisions that you hope and pray gives you the results you seek.
The questions I have are ongoing. As my surgery approached a week ago, I awaited my doc to return my call. After all the lengthy discussions we had about my never-ending questions, after all the calls and appointments to discuss my research and needed clarity, I still had a few more that may or may not have affected the procedure (everything went on as planned).
I consider myself lucky; I was/am guided by an amazing medical team and feel confident they want me to survive as much as we want me to survive, damned the statistics!
When folks question the decisions I am making about my treatment, I explain that I’m talking to expert researchers, that I’m doing my own research as I advocate for my health and well-being, that I’m questioning my options and treatment protocols, that I’m questioning what is reasonable for my lifestyle and hopes for the future, and, then, after all of the thinking and weighing and knowing that there is still much unknown, making the process flawed in many ways, I come to a decision and we all move forward.
I understand that just because I beat a set of statistics now means nothing for my future. There will always be odds in my favor (no breast cancer for you! oh, wait…), but considering I’ve fallen outside those odds many times, I know despite my fierce efforts to make the best decisions to protect me from being the 1%er again, there are no guarantees.
The best advice based on my experience is this: You do your best with the information at hand. Then you get on with life.
Next up for me? Gonna buy me some Power Ball tickets. Sure, sure I know the odds are against me…