The Terrifying Thing I Have to Do Because I'm at Risk for Breast Cancer

breast cancerThe front of the office is as banal as they come. Brick building. Leaves blowing outside. A white door with black trim. A few stairs leading up. From the outside, you'd never know that everything I've ever feared -- every Freddy Krueger-induced nightmare, every haunted house and hairy spider -- has nothing on this.

It's just an office. An office with one sign outside: The Millburn Breast Center.

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I am high risk. And inside this office is my future. Every time I visit from now on, I will leave knowing whether I have another six months of happiness with my family or a horrible six months of uncertainty, surgery, medical stays, and treatments ahead.

With my family history, it could go either way.

My mother died at 45 of breast cancer, and both my maternal aunt and my maternal grandmother have had it. It killed my grandmother at 88. Officially she died suddenly, but her death certificate says "breast cancer" is what killed her.

If it sounds dramatic, it's because it is. I've seen what breast cancer can do.

The last four years of my mother's life were a series of indignities too awful to remember without wanting to run back to my bed and pull the covers over my head.

Whirring machines dripping poison into her veins, know-nothing doctors whispering things like "you'll laugh about all this someday" that were meant to encourage but instead made us cringe, and worst of all, the slow deterioration in spite of it all -- going blind in one eye, then the other, bones that seemed to shrink into themselves, all rendering my once-strong mother into a shriveled-up, bird-like version of herself.

By the end she couldn't climb the stairs. She couldn't drink from a cup. She could barely even walk. And all she did was moan in pain.

When you are 16, you think 45 is old. My mother had traveled the world, climbed deep into the Andes, and lived in Europe for a year on $5 a day. She'd had plenty of time on this Earth.

And yet, now I know she hadn't at all.

She was impossibly young with two young kids. I was 16 and my sister was only 7. Now that I am 37 with three children of my own who are all under 7, I can only imagine what she must have felt. Leaving my kids in eight years? Never. Not meeting my grandkids or dancing at my children's weddings? Impossible.

And so I find myself here. Outside this building. Hands shaking.

It's not that I didn't assess my risk before. At 33, I took the test for the BRCA gene mutation (the gene that raises one's breast cancer risk to 80 percent). I was negative.

But what they don't tell you in all the news articles about Angelina Jolie and her double mastectomy is this: There are more genetic cancers out there than just those caused by the BRCA. There is no doubt that my family's genes are defective when it comes to breast cancer.

I fill out the forms and wait my turn. I am called into a room. The doctor comes right in. First question: Am I breastfeeding? I am. This means I can't do a mammogram right now. I also can't do an ultrasound or an MRI or most of the other high-risk tests someone like me -- someone with a 20-25 percent chance of developing breast cancer in my lifetime -- would ordinarily start with.

Instead, the doctor, a very sweet, reassuring woman with more knowledge on this issue than anyone could hope for, asks me to take off my shirt and put on a pink (of course) robe.

"It opens in the front," she explains.

She palpates me and declares me "perfect" before writing a prescription for next year's mammograms and ultrasounds. I am officially on the "high risk protocol."

I walk out feeling accomplished, paper in hand. I drive home and hug my kids. I am cancer-free. At least until the next time. For today. But I don't know what is lurking on the inside, too small to feel, lying in wait. My mother found the lump herself. At 40. By then it had progressed to Stage III.

She was in remission briefly.

But when it came back the second time, it killed her within a year.

Others can have their pink ribbons and survivor days. But I'll sit them out. I am not a survivor. I am not even a "previvor" since I don't have the BRCA. I am just another "high risk" person who tries my best to make sense of the studies that contradict one another, who tries to understand the difference between those who survive this disease and those who succumb to it. I am someone who trembles when I go to the breast center because I have seen what this disease can do.

I am absolutely terrified to walk in that door every few months. But I know I have to. It's the promise I made to myself when I was 16. I won't die young if I can help it. At least not this way.

So it's monthly self exams, as many tests as the doctor orders, and shaking hands for me.

If this means I never have to go through what my mother went through and my kids never have to go through what I went through, I'll take it.

Happily.

Do you check yourself for breast cancer?

 

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