Discuss and debate the issues that mean the most to you.
I’ve gone and done it, blown my New Year’s resolution to stop reading the comments on any given news story.
“I'm so scared about dying in a car accident that I'm thinking about removing the tires. Angelina Jolie should go see a psychologist you cannot live in fear of everything.”
I dug up that gem—one of the less hostile ones, actually—in the comments section of a Huffington Post news story about Angelina Jolie’s New York Times op-ed piece. These insults were sprinkled among comments praising the actor, mother and humanitarian for using her celebrity pulpit to spread awareness of hereditary cancer risks. I could probably post a hundred more that criticized her choice, but I won’t. Because right now I’m seeing spots of rage.
I take such comments personally, not because I have a huge girl crush on Angelina, or because we’re obviously twinsies (cough, cough), but rather, because we’re both mutants. (OK, that’s not exactly a PC way to put it, but it’s how some BRCA mutation carriers jokingly refer to themselves. You need off-color humor sometimes to deal with the realities of this mutation.)
For every Angelina Jolie, there’s someone like me, someone who didn’t know she carried a potentially fatal genetic mutation until after being diagnosed with cancer.
Look at me, world! I’m a cautionary tale!
In 2013, at the age of 36, I went in for a baseline mammogram. I left that warm September day with x-ray images of diseased-looking breasts burned into my brain and the radiologist’s words, “There’s a lot I find suspicious” echoing in my ears. I wanted to tear my boobs from my chest.
Three biopsies later, I learned I had breast cancer. Not just in one breast. Both. The tumors, while caught early in stages 0 and 1, were grade 3, which, in cancer-speak, means they were aggressive. In addition, there were signs that cancer cells had breached my blood vessel walls and could have escaped into my bloodstream. All this, and I never had a lump or any other symptoms.
A few weeks later came the smoking gun: a positive test for a BRCA mutation. The deaths of my paternal grandmother, my grandmother’s twin sister and my aunt from breast cancer weren’t bad luck. In my family, we had genes that killed. BAM! In your face, every-doctor-who-ever-told-me-that-I had-nothing-to-worry-about-because-the-cancer-was-on-my-father’s-side-and-that-my-breast-cancer-risk-was-probably-the-same-as-the-general-population!
Over the course of a year, I would have a double mastectomy and breast reconstruction using a technique known as Deep Inferior Epigastric Perforator (DIEP) flap, which harvested fat from my abdomen to recreate the breasts. I would also undergo eight rounds of chemotherapy, a hysterectomy and oophorectomy (removal of the uterus and ovaries, respectively), and nipple reconstruction, along with facing down at least 10 years of taking the drug tamoxifen to suppress any residual estrogen production, because my tumors liked to feed off estrogen. Thanks to the drug regimen and forced menopause, a good day for me means feeling like I’m 70 instead of 90.
So please, don’t think we BRCA mutants take such decision-making lightly. It’s just that the alternative—namely, death by cancer—can be a lot worse. Angelina and I carry mutations in our BRCA genes, she BRCA1 and for me, BRCA2. We all have BRCA genes, which normally produce proteins that help stop cancer-causing DNA errors. However, for BRCA mutation carriers, these proteins don’t work properly, making us more susceptible to the Big C.
I remember Angelina taking heat for the first op-ed piece she penned, describing her preventative double mastectomy. But I envy women who are able to reduce their risk of hereditary cancer by being knowledgeable, getting the necessary screenings –and yes, if they choose to, surgeries—to help reduce their risk before cancer ever has the chance to rear its big, fat, ugly head.
Just how effective is this surgery for preventing breast cancer in women who are at high risk? Try 95 percent or more, according to the National Cancer Institute. You don’t think that statistic haunts me, that had I known about my genetic mutation I might have had the opportunity to reduce my cancer risk drastically?
If I had my surgeries preventatively, I’d feel a whole lot better right now about the odds of seeing my two young kids grow up. As for ovary removal, that reduces the risk of ovarian cancer by up to 90 percent and breast cancer risk by 50 percent in high-risk women.
I feel for Angelina and all others who are faced with the choice of removing seemingly healthy parts of their body—the very parts that society so often uses to define womanhood and sensuality. For me and my breasts, things were more cut-and-dry: I had cancer in both of them and they needed to go. But the hysterectomy and oophorectomy? I was removing my uterus and ovaries based on odds. Though I hated doing it, I never wanted to be facing a cancer recurrence and have “coulda, shoulda, woulda’s” filling my head.
Hopefully my journey is winding down, with just my areolas to be tattooed on. My BRCA2 mutation also carries increased risks for pancreatic cancer and skin cancer, to name a few. These risks are nowhere near as high as those for breast cancer and ovarian cancer, but having this knowledge allows me to be vigilant just the same.
So, I just want to say, Ang, if you’re reading this, GOOD FOR YOU! You were your own advocate and set the course that best suited you—all that any of us can really do, whether we choose surgery or surveillance. Let no one criticize you for your choice. It was yours to make, and yours alone.
And for that HuffPost commenter who used the automobile analogy I referred to earlier, I’m going to break down Angelina’s recent decision for you with another auto analogy, one often used in BRCA circles: If you knew you had a 50/50 shot of your brakes failing, would you continue to drive that car? Or would you do something to fix the friggin’ brakes and keep yourself from dying in a fiery crash?
Yeah, that’s what I thought.