Living with BRCA2


Living with BRCA2

Being genetically predisposed to breast cancer is a biological clock with its own special terror

By Liesl Goecker  October 7th, 2015

I look around at the other women in the waiting room, most my age, maybe a little older. I wonder how many are here because of a pregnancy. I wonder how many are here because of cancer. I wonder how many, like me, are scared by both.

A year ago, as my sister was preparing for a double mastectomy, I underwent a test to discover if I had a genetic mutation that increases the risk of breast and ovarian cancers. Five days after my wedding, I got my results. Like my sister, I have the BRCA2 mutation, which increases a woman’s risk of developing breast cancer by 45 per cent and ovarian cancer by 11 to 17 per cent. Of the two possible BRCA mutations, it’s generally considered the better one to have — after all, there’s still a very decent chance you won’t get either. But my sister’s ordeal was fresh in my mind. I called my husband from the lab’s waiting room, trying to stifle silly tears. Welcome to the family.

For a year, I did nothing. I sat on that knowledge like a hen sits on an egg — staunch, immobile, protective — and waited for a wisdom that never came. Finally, I scheduled an appointment with a gynaecologist, who did a general exam. Once I told her I was BRCA2 positive, she only pointed out twice that I should’ve come sooner (“No, really”) before moving briskly ahead. We scheduled a full set of imaging for the next week. Standard procedure.

Which brings me to today, to the aggressively lit room.

I enter the imaging practice and speak to the receptionist. He gives me a chit for a pelvic ultrasound and a breast sonogram. After a bit of back-and-forth on whether I need a mammogram, too (recommended for BRCA2-positive women my age), he says I should talk to the breast radiologist. But first, go to the left wing of the practice and find Fatima.

I walk in the direction of his vague gesture wondering how I will identify Fatima. No one is wearing nametags. Is she a nurse? Is she the practice’s nickname for the sonogram machine? I stand, a clueless foreigner used to clearer guidance, and wonder which of the white-coated technicians is Fatima. As it happens, she isn’t any of them. A rotund, no-nonsense woman in rubber-soled shoes and a flowered salwar kameez approaches and asks to see my paper. I ask if she is Fatima. She says yes, and I hand over my chit.

She directs me to the stinky blue chairs, telling me I’m next. I sit obediently. After a few minutes, Fatima asks me if I have a full bladder. I say no; no one told me I needed one. She ignores my passive aggression and asks if I’ve drunk anything this morning. I hold up a half-empty bottle of water, and she tells me to finish it. I watch news on the blaring TV for 20 minutes, picking up every tenth word in Hindi, until Fatima tells me to drink even more.

I settle back in my blue chair, with two new water bottles, and secretly watch the other patients between sips. The pelvic ultrasound is the same kind that pregnant women get. The difference between what I’m here for, and what I could be here for, chafes me as much as the rough vinyl seat. A dear friend of mine, in her first, secret trimester, just had the same ultrasound the week before. It was a special experience for her, a first look at the life she and her husband would nurture, and I wonder if it will be so for me too, some day. I’ve given a lot of thought to having children, but it’s never led to strong feelings either way. Instead, I have nightmares, every six months like clockwork, of terrible scenarios in which I accidentally harm an infant — once by putting it to bed in the refrigerator, another time by forgetting it in a car. Maternal is not a good adjective for me; a more apt description would be: wanting to want children, or waiting to want them. While I have undying affection and devotion to a niece and nephew on my husband’s side, kids of my own always belonged to some vague, misty future, down the path of “what’s done”. I’ve always assumed I would stumble upon it someday, and, in a bloom of enthusiasm, get knocked up tout de suite. But now, at almost 30 — after more than a decade of successfully and obsessively guarding against pregnancy, and as my Facebook feed is flooded with bubbly, toothless smiles — motherhood still seems very far off.

But when you’re genetically inclined toward a disease that could take away your ability to reproduce (if it doesn’t kill you first), you start reconsidering your laissez-faire attitude toward parenthood. You’ve seen your friends’ joy in their children, and their pain and frustration when they waited too long. You start wondering if your ambivalence is immature. If it’s selfish. If you should just take the plunge, not because you’re ready or at your most fertile, but simply because you’re still healthy.

Then you wonder if you have any business having kids at all.

BRCA mutations are hereditary, meaning any child of mine will have a 50-50 chance of carrying on this dubious family legacy. And what kind of person willingly passes on a high risk of cancer as casually as passing on curly hair or hazel eyes? Maybe this is my moment in the evolutionary spotlight, maybe this is how cancer is cured — not with a bang, but with a whimper. Maybe this is the sign I’ve been waiting for, but not expecting. Suddenly, those bubbly, toothless photos look a little wistful. I start avoiding Facebook entirely.

This is a new conundrum for women, for which there’s no guidance; a decade ago, this test didn’t exist. Even now, it’s not common. But as the body of knowledge around cancer grows by leaps and bounds, this test and others like it will become a matter of course for my generation. We will have increasing amounts of individual, biological knowledge to guide our choices in life and health. It’s a heady place to be, full of hope and promise, but I wouldn’t mind skipping ahead to where the path is clearer (and cancer is cured, if I’m honest). For while all this information might make our decisions better informed, it won’t make them any easier.

I’m in the waiting room for my breast sonogram and mammogram, now. The chairs are nicer here, covered in a mauve cloth that is gentle against my bare legs and doesn’t offend any of my other senses. The lighting is also dimmer, less fluorescent and clinical, and I start to relax. The radiologist who did my pelvic and abdominal ultrasound has pronounced me “in good shape”. That’s one body part I can tick off as cancer-free (and, for now, baby-free) at least until next year’s check-up. I send up a quick thanks to a vague deity and settle back with a book, still waiting.

But the walls here are thin. Through them, I can hear the doctor tell a woman she has a tiny lump in her left breast. The woman’s response is a low murmur, and I quickly move to the other side of the waiting room, hoping I don’t hear more — for her sake, as well as my own. All of a sudden the worry is back. While I know (rationally, I know) a BRCA2 mutation doesn’t mean I’m assured of cancer, I can’t help but wonder which of my biological clocks will chime first. And worry what it says about me if one never does.