I sat in a sterile room with a man I’d just met, looking at pictures of women’s bare breasts on his camera. My baby, still young enough to sleep through everything but the night, hadn’t stirred once in her car seat on the floor next to me. I was relieved: I might be able to make it through the visit without having to be mom and patient.
“Do you know if you’d want to save your nipples?” the resident asked. He meant as opposed to tossing them and having new ones tattooed on my breasts.
How many weeks had it been since I’d learned nipple tattoos were a thing? Four. How long since I’d first traced my family tree, searching for ovarian or breast or pancreatic cancer in close range — and come up empty? A year.
My son’s genetic counselor, Shelley, had delivered the news a year ago over the phone. My second born, whose list of strange medical issues and delays seemed longer than his short body, had undergone genetic testing the previous year when he was just 3. My husband and I had given our blood, too, and our vials were sent off along with his, just in case they found something in his sample they could trace back to us.
They did, incidentally: A change in one of his genes that had nothing to do with his symptoms but everything to do with our future as a family.
“Have you heard of the BRCA mutation?” Shelley asked that afternoon. I was taking notes at the kitchen counter as my daughter threw a tantrum in the family room. “We found that your son has this mutation, and so do you.”
I told her I wasn’t ready to hear the numbers, the lifetime risks for breast and ovarian and pancreatic cancer associated with a BRCA2 mutation. I knew they couldn’t be good if women voluntarily had their breasts removed. I had no idea what this meant for my son, who had no breasts or ovaries, who still peed in a pull-up and watched Daniel Tiger. And what about my 4-year-old daughter?
“She has a 50 percent chance of having the mutation,” Shelley said.
Just that morning, unaware of my genetics, I’d taken a pregnancy test. It had come back positive. The daughter born nine months later also has a 50-50 chance of having the mutation.
One saving grace in finding out your child has a BRCA mutation is there’s nothing you can do about it . There are no preventive actions to take for children because the associated cancers are adult onset. There’s no need to perform prostate screenings on a preschooler, and because there’s no medical benefit to knowing, our geneticist won’t even test my daughters until they’re old enough to understand what the results could mean. The good news is, I have nothing but time. The bad news is, I have nothing but time — about ten years, to think about the conversations waiting for us.
How will I introduce the idea to my older daughter, who seems to have inherited my anxiety? What about my son, who seems to process ideas visually? Should I draw him a picture, hand him a pamphlet with charts? Will I talk to each child individually, and, if so, how can I make sure the older two don’t tell the youngest? Or maybe she’d rather hear it from them. Maybe that’d be better. Or perhaps my husband, a counselor and pastor, could at least open the conversation. Because I already know I’ll want to disappear.
Fortunately, some decisions for a BRCA2-positive mom are straightforward. Because doctors don’t have a good way to screen for ovarian cancer, I will have my ovaries and tubes removed before I turn 45. I will see a dermatologist and visit the high-risk pancreatic clinic to learn about nutrition. But no one will tell me what to do with my breasts.
That day, the plastic surgeon and his resident could tell me about infection rates and blood-clot risks, of reconstruction and recovery times. They could even guide me on the when: “You won’t be able to carry around a baby,” the surgeon said. But as long as I don’t have cancer, the decision remains a personal one.
Other doctors and counselors at the cancer center listen to my story and say things like: “This really came out of left field for you, didn’t it?” They want to give me more, but they have to point me back to the numbers. My lifetime risk of getting breast cancer is still between 45 and 87 percent. I could keep getting mammograms and breast MRIs every year for the rest of my life. Or I could cut my risk to under 5 percent with a double mastectomy.
In the meantime, the plastic surgeon took photographs of my bare breasts to have on file for if or when I schedule my surgery. It’s not like my daughter would remember any of the strange photo shoot, but I was glad she slept through the whole appointment. At least I could shield one of my children from something.
I’ve read about and talked to other women who find great power in knowing. They see their results as a chance to change their story, to beat a diagnosis. Maybe even shield their children from the worst. In A Cancer in the Family, Dr. Theodora Ross writes, “I had thought knowing would make me miserable, but it didn’t. It energized me and made me effective.”
But for me, knowing has made me miserable at worst, avoidant at best. It’s not that I don’t want to know; I do. It’s that I miss life before anyone knew there was something I needed to know. Before it ever occurred to me that my son, whose challenges have puzzled everyone, might have saved my life.
I could view the surgery as an obligation. Perhaps, as a mother, I have an understood duty to reduce my risk as much as possible. Maybe a mastectomy is just a stop on the safety spectrum that includes wearing my seatbelt and choosing not to smoke. It would make my decision easier, thinking that I owed this surgery to my son for all the times he was poked with needles. But something about that reasoning just doesn’t ring true. I don’t want to pin this on him. I just want to know.
My two older sisters, who don’t have the mutation, offer their opinions when I ask. They have somewhere between begged and insisted that I have the surgery sooner rather than later. I don’t tell them that sometimes I wake up in the middle of the night convinced that a mastectomy would be an embarrassing and dangerous overreaction.
My mom, who we now know carries the mutation, stays quieter on the subject. At 63, she had her ovaries removed, but she won’t have a prophylactic mastectomy, and, if she’s anything like me, dreads the idea of her baby one day losing her breasts. When I asked my husband what he would do if a surgery could reduce his risk of prostate cancer from up to 87 percent to less than 5 percent, he said he’d probably choose surgery.
The appointment with the plastic surgeon ended the way all of my BRCA appointments do. Whether it’s the breast surgeon, gynecologic oncologist, mammogram or ultrasound tech, someone asks if I have any questions.
I do. What, exactly, are my risks again? What does it mean that I don’t have a strong family history? How is a genetic mutation different from a genetic predisposition? Have you ever seen a case like mine or my son’s?
All of those questions form the only question I’m really asking the doctors, the techs, my husband, and God: Is the threat real? Or, in the words of a nurse at the cancer center, “So you don’t actually have a problem, per se?” I don’t know. Do I?
I figure if someone can tell me how critical this is — or if this is a lot of hype over nothing — I could stop swinging between two extremes. In one scenario, I have a prophylactic double mastectomy then get hit by a car — and it didn’t matter that I tried to live for my children. In the other, I opt out of the surgery and live to be 139, seeing all my kids graduate and get married before dying from a parasite.
Lately, it’s been the words of a friend through the nonprofit Bright Pink that I’ve been turning over in my head: “The risks are real, and they’re high,” she said over the phone. “They’re just not necessarily imminent.”
This, I think, is where I live for now. In a place of both grace and confusion, wherein nothing is imminent yet everything matters. I schedule consults and MRIs while praying that one day I’ll know more than indecision. Until then, I move like a healthy imposter through the halls of the cancer center, where patients say “Good luck” to me, and I want to apologize. Instead, I just say thank you.