THE BLOG
05/23/2013 12:56 pm ET Updated Jul 23, 2013

Ask the Mutant: An Insider's View of BRCA Surveillance

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Many people were shocked by the drastic measures Angelina Jolie took to prevent breast cancer. They ask: Why not just be more vigilant and catch it early instead?

As someone who's been there, let me take you on a little journey into surveillance when you're BRCA positive.

You're sitting in the radiologist's waiting room. You had a mammogram last week, and they called you back for a second look because there was something they couldn't quite see well enough and since you're BRCA positive, they're extra cautious. Double that if you have dense breast tissue, which makes your breasts a particularly evil Where's Waldo? scene. (Mine were so dense that when I had exams, doctors would go round up all the med students and interns so they could learn what dense breasts felt like.)

You're cooling your heels in the waiting room rather than heading home because the radiologist wants to talk to you. Swell. Your phone rings. It's your sister informing you mom is back in the hospital -- her cancer has returned. The nurse calls your name. The radiologist found a small mass in your left breast. A little calcification. Probably nothing. But it has a tail on it -- possibly a sign of something moving along a duct.

"We need to biopsy it. Have you had aspirin in the past ten days?"

"Yesterday."

They set an appointment for a biopsy in nine days, which you sweat out, while your brain rummages through the closet of your brain, trying on every nightmare. Biopsy day finally arrives, but that morning there's worse news: Mom's cancer has metastasized throughout her body. They're going to try chemo, but it doesn't look good. You lie face down on the table, breast dangling and harpooned by long needles, imagining the great mother-daughter days ahead, bald and vomiting into matching plastic trays.

Then you wait some more, trying to get a little work done, trying not to snap at people you love. The call finally comes. Benign! It's like your birthday, New Year's Eve and getting out of jail all at once!

All too soon you're back again. Most BRCA1 breast cancers are triple-negative -- the kind that can blossom and spread in just a couple months, so you can't wait long for another check. This time it's an MRI. They put an IV in your arm for the dye and squeeze you into a narrow, clanking tube. It takes about a year and you wonder if you'll ever breathe (or hear) again. The next day the phone rings. They found a suspicious mass in your right breast. It looks like a tangle of abnormal blood vessels. Swell. This time you were smart and swore off aspirin weeks ago, so you get an appointment in a few days to come back for an MRI-guided biopsy. Back in the clanking tube! Only this time, with more needles.

Then you wait. Again. Jumping every time the phone rings. Wondering how disfigured you'll be after a lumpectomy, how badly radiation will burn your skin, who will make soup and sit with you and stroke your brow now that mom is gone. The call finally comes. Benign again! It was a complex cyst. Once more, you beat the reaper, but the celebratory bloom is off the rose.

So, let me ask you: How many times will you do this, knowing they'll find something every time? Maybe you've got decent insurance now, but what happens when you retire? When you change or lose your job? Who pays for all those MRIs at $1,000+ a pop? If you have a mastectomy now, it's done and paid for. If you have a mastectomy now, it's just a mastectomy. If you wait, it's a mastectomy, chemo, radiation and possibly death. The future is a vast unknown with a giant C on it.

Let me ask you. Who is the real you? The happy, focused, vital woman who made the drastic choice to "mutilate herself" and then move on? Or the physically intact, natural "as God made you" woman who lives in dread of the next round of surveillance, who, with nearly certain odds of the deadliest form of breast cancer, knows that her dread is justified?

Let me ask you. When they talk about the numbers of women who choose surveillance, how long do you think that's for? How many switch camps after a few rounds -- either because they can't bear it anymore or because cancer made the decision for them? Some do stick it out and I salute their courage. I couldn't.

Let me ask you. Whose decision is it? And who are you to judge me for it?

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