I'm At High Risk For Breast Cancer, So I Decided To Become A 'Previvor'

by Kate Emery
Originally Published: 
Kadienne Leigh Photography

In high school, my best friend coined them “Trixy” and “Factilitatrix.” The former was a play on “Trix are for kids” (which, like, truth). The latter’s inspiration was a SAT cram session where the word “facilitator” reminded our crew of a few unintentional wardrobe malfunctions that made my chest a bit too easily accessible. I mean, come on, you didn’t truly live in the fabric crisis of the early 2000s if you didn’t experience at least one accidental indecent exposure from a lingerie-style tank top. In retrospect, I could have (and maybe should have) been offended by the sexual undertones of my breasts’ namesakes. But, I happily participated in the naming convention.

Ignoring my body just wasn’t a feasible option back in the days of Mean Girls excessivity. My waist (26”) and bra (32DD) had quite a noticeable size disparity. I was an hourglass in a time of Victoria’s Secret wall calendars, where everyone thought they had the right to comment on and judge everyone’s bodies. I refused the manic pixie trope, that cringey giggling and blushing at ogling eyes. Staring or sharing uninvited commentary on my ‘fun bags’…’melons’…’rack’ got you a healthy dose of feminist passive aggression.

Kadienne Leigh Photography

It would be dishonest to admit my breasts haven’t shaped who I am today, both literally and figuratively. Whether welcome or not, the girls have always been a defining feature. But, to me they represent far more than a playground for my husband. They served as a milk factory for 3 squatters who decided the free housing of my uterus just wasn’t charitable enough. They served as a semblance of femininity when my post-baby silhouette resembled a less hairy True Gritty mascot. They’re part of what makes me, me.

…that is, until I realized Trixy and Faciltatrix were on a Kill Bill-style mission to assassinate me.

As we all learned in the scientific masterpiece known as Jurassic Park, Mr. DNA gives a blueprint to all living things. Some DNA can make badass dinosaurs or a fantastically shirtless Jeff Goldblum. You see, we humans have super needy, high maintenance DNA that needs constant attention from Avenger-like genes. Like Iron Man, BRCA1 and BRCA2 are two such heroic genes with a savior complex: their superpower is producing proteins that rescue DNA-damsels in distress. Everyone has BRCA1 and BRCA2 genes — when it comes to cancer, they are Thor’s hammer.

Mutated BRCA genes unfortunately don’t turn the receiver into ninjas or, frustratingly, turtles. Rather, BRCA1+ are harmful gene variants equivalent to those dudes that peaked in high school. DNA is more prone to damage as we age. When we get older, we need BRAC1 genes more than ever. Mutated BRCA1s are off somewhere drunk on Jack and Diet Sprites, retelling their fabled glory days as surrounding damaged DNA shouts “SOS” into the oblivion.

My grandmother, Mom’s mom, died of breast cancer when she was 83. My mom was diagnosed with DCIS (a form of breast cancer) 15 years ago. Thank the Flying Spaghetti Monster for U.S. private healthcare: despite breast cancer becoming a family tradition, my mom didn’t get the ultra-expensive BRCA testing until she was eligible for Medicare. Go socialism! After my mom was diagnosed, I learned at the age of 32 I had a 50% chance of inheriting the same BRCA1+ shitty gene.

Kadienne Leigh Photography

Private insurance companies really don’t like to cover BRCA testing. Despite immediate family history and knowing my mom’s exact mutated gene, my insurance repeatedly declined to cover the testing. I assume my OBGYN took cues from Black Widow to get Aetna to acquiesce. Let me remind you: I had documentation from a leading hospital network that my mom had the gene variant. The insurance company knew I had a 50% chance of being BRCA1+ and still fought testing for months. If it wasn’t for a cancer-battling colleague’s persistence (RIP, my wonderful friend Alison), I likely would have given up and, much like the 70 million Americans who voted for an imbecile, ignored the facts and science that gave me the coin-flip’s odds.

Nine months worth of insurance company waltzing and all I got was a lousy positive BRCA1 variant diagnosis. Trixy and Facilitatrix’s plot to strategically kill was unearthed. About 13% of women will get breast cancer in their lifetime. In contrast, up to three out of four women adorned with a BRCA1+ variant will develop breast cancer. Unfortunately, BRCA1+/BRCA2+ are the genes that keep on giving, much like a Norovirus cycle that hits an entire household: almost half of women with BRCA1+ variants will also develop ovarian cancer.

Corporate job – check. Raise 3 little humans not to be assholes – uh, kind of check. Every few months go for yearly MRIs, mammograms, ultrasounds, biopsies…well, shit. That’s one check box I wasn’t prepared to make. Every doctor — all of whom are way smarter and more qualified than me or, shockingly, YouTube — suggested preventative mastectomies. Given my family history, and the drunken, washed-up gene, my breast cancer odds were too close to 100% for comfort. After a mammogram that had me go back and scan an area twice, I made my decision to part ways with the girls.

Kadienne Leigh Photography

Preventative mastectomies are about as personal of a decision as you can make. Angelina Jolie drew attention to preventative breast surgery after her double mastectomy in 2013. Outgoing Press Secretary (what a relief to say that!) Kayleigh McEnany used the Republican National Convention this past summer as a platform to reveal her BRCA2+ journey towards her double mastectomy. She represents the worst administration our country has ever faced, but I respect her giving visibility and awareness to a surgical procedure on what some may perceive to be a perfectly fine body part.

On December 7, 2020 I will be undergoing a (hopefully) preventative double mastectomy with immediate DIEP flap reconstruction. Basically, a breast surgeon will be taking a scalpel to those fun bag pinatas and, rather than implants, a specialty microsurgeon will reconstruct using my own stomach fat. A few months ago I had a Phase 1 surgical breast procedure to prepare the girls for removal: my nipples were repositioned and tissue was reduced. Let me just say, Trixy and Facilitatrix have been totally upgraded. Only, they’ll be undergoing another 10+ hour remodel in a few days, leaving them with quite the battle wounds.

The wounds will heal and scar. The drains that collect post-surgical excess fluid will eventually be removed. The anxiety and fear of breast cancer will be minimized with odds reduced to less than 5%. Most importantly, my kids are more likely to have their mom here for longer.

The mounds of fat soon to be exiled from my chest are no longer part of my identity. My identity is a marketing director, runner, zookeeper/mom, fandom geek, amateur rock band singer. I’m leveraging the knowledge that medical science has gifted me and taking control of my health and, ultimately, my future.

Go home, BRCA1+, you’re drunk.

I’m a previvor.

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