Getting diagnosed with a breast cancer gene mutation at 32 was a gift, but left room for disappointment too.
I lay on my back and opened my robe, just as I’d done for every other appointment. But when the doctor prodded my new breasts with her fingertips, I felt naked for the first time. Thin, sloping scars were exposed on my chest, where a surgeon had removed my nipples, but left a smaller version of my areolas.
“If you ever want tattoos, I know a guy named Vinnie in Baltimore. He’s good,” my gynecologic oncologist said as she helped me sit up on the exam table.
“Thanks, but I think I’m good,” I said. My answer was a reflex. I’d had a preventive double mastectomy with reconstruction — two surgeries five months apart — during a pandemic, with three kids at home. I couldn’t fathom driving to Baltimore for 3-D nipple tattoos.
My middle child, Tophs, had helped us discover the BRCA mutation. His puzzling medical symptoms, including dangerously low blood sugar and growth failure, led doctors to order a genetic test of more than 20,000 of his genes. I never expected that my 4-year-old son carried a BRCA2 mutation, and, as it turned out, so did I.
I was 32, and the diagnosis — an increased lifetime risk of developing breast cancer (up to 85 percent) and ovarian cancer (up to 27 percent) — was devastating. Because the cancers associated with BRCA mutations develop in adulthood, my son’s care didn’t change, but my medical team expanded overnight.
I immediately entered a high-risk program at the University of Virginia’s Emily Couric Clinical Cancer Center, and met my gynecologic oncologist, breast surgeon and plastic surgeon. They showed me photographs of women’s torsos before and after surgery. We discussed my family tree, which was marked by a variety of cancers on one side. Having a BRCA mutation doesn’t mean you’ll get cancer. It just means you have to weigh whether you want to spend the rest of your life under surveillance (alternating breast M.R.I.s and mammograms every six months) or take things into your own hands with a major preventive surgery.
Myself, I waited four years to decide. First, I had one last baby and nursed her until the fat filled her thighs and made delightful pockets around her elbows. I took time to write essays and landed a book deal. I prayed, and waited for guidance on timing. Then, before the baby turned 4, I read a piece by the late writer Elizabeth Wurtzel on breast cancer and her words nudged me over the edge: “I could have avoided all this if I had been tested for the BRCA mutation,” she wrote.
I had that chance; I could still get ahead of the cancer. I called to schedule the surgery and reminded myself that along with decreasing my risk of breast cancer, I’d also get a “free” breast reduction and lift. It was a vain silver lining, but I clung to it.
***
I’m a year out from my two breast surgeries. They call me a “previvor,” meaning I have a genetic predisposition to cancer, but haven’t developed it. My lifetime risk of getting breast cancer has been reduced by at least 90 percent. I’m confident I made the right decision for me, though most days I don’t feel especially brave or empowered. Grateful? Yes. But when I quiet all “shoulds” and expectations in my head for a moment, I hear a call from within to survey the changes to my body. To allow myself room for wonder and even disappointment when I look down at my chest. I ask myself for permission to grieve.
During my breast reconstruction, the plastic surgeon suctioned fat from my thighs and flanks and inserted it around the implants to make them appear more natural. It left my thighs dark purple with bruises, the pain far worse than I’d imagined. Over time, the bruises disappeared, but so did the fat placed around the implants; my body reabsorbed it. Now when I take off my bra, I see ridges and dimples that can’t be smoothed without a third surgery. My breasts have more lift and are smaller than they were after nursing three kids, and without nipples I’ll never again have to buy breast petals to wear with a strapless dress. But it’s also true that the holes where drains were inserted during my mastectomy left behind pock marks that remind me of cigarette burns when I glimpse them in the mirror.
“You’ll do great,” people said. “You’ll feel so relieved.” I needed their voices, echoing as doctors rolled me into the operating room. All things considered, I did do pretty great, I have little to complain about.
Yet, can my body hold two truths? Do I have room, between the asymmetry of my new breasts and my clean bill of breast health, to lament? To say: I’ve lost something, too. After having kids, my breasts sagged, looked worn out, but they never appeared unnatural. They were mine. Now when I undress in my closet with my back turned, it’s not just that I’m prone to shame. I’m also taking space to relearn my body, how it feels to live in a place that’s been rearranged. Doesn’t each of us, at some point in our lives, have to confess: I thought this body was one thing, it turns out it’s another.
***
Previvor. It’s a privilege, no doubt, a deep bow to science and, for me, to God. I cannot help but look around at friends who already have cancer and never got a chance to pre-empt anything. We call that perspective, right? But if I told you I knew how to navigate the psychological terrain between honoring others’ harrowing stories and my own, I’d be lying. It can’t be healthy to hide behind gratitude without acknowledging that sometimes I feel like the subject of a Cubist portrait — a woman made of fragments pieced together, almost recognizable as her own. I’m looking for space, as a previvor, to mourn. A space where I can stop and consider that my scars are signs of relief but also collateral damage from a choice I made. I am fortunate and disappointed, indebted and sad.
I may never have breasts fit for Playboy, but recently I’ve reconsidered my “Thanks, I’m good” approach to nipple tattoos. Now that my skin has healed and I’ve had some distance from the trauma of surgery, I’m more open to the idea of making my breasts beautiful to me. Maybe it’s vain, but maybe it’s not ungrateful to want my breasts to look more polished or complete.
The other day I ordered a temporary tattoo print — a mix of cool blues and greens, a dab of lavender, coral and pink — called “Confetti Floral.” Back when I first visited the plastic surgeon, he’d shown me photos of women who chose to have intricate designs, rather than nipples, inked on their chests. I couldn’t appreciate their artistic decisions then; I was drowning in new information. Now I’m standing somewhere between perspective and grief, and perhaps this area is just to reimagine my body and its beauty. I keep the fake tattoo in its plastic film on a bookshelf in my office, as a reminder that I have options. In time, as I parse what matters to me from what can be discarded, maybe I’ll give Vinnie a call and ask if he takes special orders.
Taylor Harris is a writer based in Pennsylvania and the author of “This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown.”
