Breast Cancer Awareness Isn’t Enough

 I have a family history of breast cancer.

That is my checkbox. The one on the forms I fill out twice a year. I’m a healthy 37-year-old woman and twice a year at screenings, once at my yearly checkup, and for the entire pink filled month of October, I’m reminded that I have a solid chance of developing this disease. 

My family history of this disease looks like it’s from the textbook entry that explains the BRCA gene mutation. Pretty much my whole maternal side of the family gets a pink ribbon. BUT, we don’t have the gene. After my mom died, her doctor joked with me that they think our family has a gene mutation that hasn’t been discovered yet. Awesome. Thanks for that. The funny thing about having a family history of a disease is that no one really tells you what to do with that information. My experience with what has seemed like a looming black cloud of fate is limited to my peripheral view of my mom’s fight in the 90’s and some anecdotal advice from her doctor to my then teenage self. My three big takeaways were:

1.       Start getting mammograms 10 years before the age my mother was diagnosed (in my case, age 35)

2.       Having children after the age of 30 increases your risk of getting breast cancer

3.       Breastfeeding your children reduces your risk

Armed with these ridiculous statements as my new holy grail of guiding principles, I entered adulthood positioning myself to pop out some babies in my 20’s and hold my breath until 35 when I should start mammogramming. Every fall, the leaves would start to change color, the pink ribbons came out, and my anxiety would rise. I’d remind myself I was doing the things I needed to do based on those 3 takeaways from my mother’s 10-year battle with this disease, and I’d measure it against my actions.

Baby #1 at age 26

Baby #2 at age 29

Mammograms at 33 (did I mention, I’m an overachiever)

Not only did I do these three things, I also got a genetic test on myself just to be double sure. The results from my mom’s test were negative meaning that I don’t have the gene either, but I watch a lot of soap operas so I know how test result tampering goes 😉. I found a breast surgeon to consult with me on my “options” which consisted of removing at least a handful of major body parts. These may lessen, yes I said lessen, not eliminate my risk of getting breast cancer, but they would greatly raise my risk of a plethora of other diseases. What?! That seems like a ridiculous trade off. I opted out of the hack and hope strategy, and then was pushed off to another lovely person in the practice who would sign off on my yearly mammogram script and we added in a routine MRI for good measure. I’d leave each appointment confident that I was on the right track and in control of my health. My screenings were in place, my risk was assessed, and I was living my guiding principles. Once a year, I’d robe up with people twice and three times my age and smash my boobs into the most advanced mammography machine I could find. Then 6 months later, I’d slide myself into an MRI machine for a half hour and listen to Adele while my limbs fell asleep and sometimes, so did I. Find it early, they say. Early detection is key, they say. I’m on it, I’d say. Fast forward two years and it was time for my yearly mammogram. I sat in the waiting room ready for the greenlight to get my clothes back on and get out of there. Then the nurse showed her face. I knew what was coming next and just as I was about to smile and nod and say “you too” for her to have a good day, I heard the words, “more pictures.” My heart stopped, I froze and was ushered back into the waiting room stranded in my gown waiting to be called back. I waited for the longest 10 minutes of my life. Of course I played out the end of my life in my head. How would my kids go on without me? I can’t believe this happened already. I’m too young for this. How will I make the most of the time I have left? Every horrible and ridiculous thought you can think of went through my head. I finally went in, they took the new images, I cursed my breast that had betrayed me, and I went back to the waiting room. Another 15 minutes later I was met with a polite, “everything looks good!” and sent on my merry way. WHAT THE FUCK JUST HAPPENED?

It took me a few months to get over the shock of that half hour and wake up to the fact that I had been living a 16 year lie. Here I was parading around like I was in control of my health, but all I was actually doing was waiting to get cancer. The pink ribbons, the statistics, the early detection, the advances in screenings, the marches and support groups and proceeds donated to this foundation or that foundation were of no value to me. Breast Cancer awareness had failed me. I had lots of awareness and it was doing me no good. I wasn’t an expert on breast cancer. Hell, I wasn’t even an expert on my mom’s breast cancer. Why was my plan just waiting 6 months at a time to get cancer? Why wasn’t I (and everyone else for that matter) focused on prevention? It was time to rethink having control over my own health. I learned a really valuable lesson that day. My health is up to me. I can spend this time working on optimizing it from a position of power, or I can wait and then spend time fighting disease against the clock. I turned to prevention and realized there was so much work to be done and so much I still had to learn. It turns out that there’s not a lot of money in prevention, but there is in prolonging disease, treating disease, and caring for people with disease.

I certainly don’t have all the answers and my quest for optimal health follows a bumpy path, but I’m doing the work, the research, and investing the time into what’s best for me. As this October rolls around again and a sea of pink PR engulfs pop culture, I hope that whatever your checkbox is, that you realize it’s yours. No one else is looking out for your checkbox, and the path you’re on today, may not be the right one. I’m thankful for the privilege I have that my mom never did, and that’s access to information. I have the ability to be my own filter and to have reach she never could have even imagined. I can follow the pink ribbons to their sources and turn my awareness into action. I’m thankful for this month of October to remind me that life is about what I can do with my circumstances and my checkboxes and that if I’m following any other random advice from when I was 19, I should probably rethink that too.