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Image: Lizzie Stark
Courtesy of Lizzie Stark
Lizzie Stark, 27 and newly wed, recently learned she has the gene that increases a woman’s risk of breast cancer.
By
TODAY contributor
updated 10/5/2010 4:05:08 PM ET 2010-10-05T20:05:08
Essay

It took a few tablespoons of my blood, a six-week wait to determine the results and only an instant to change my world.

“I’m afraid I have bad news,” my oncologist said.

Even though I’m a healthy 27-year-old woman right now, I'm going to have both my breasts removed as a preventive measure because I’m a member of a very exclusive club: Like one out of 1,000 women, I have a genetic mutation that dramatically ups my chance of cancer. My gene — called the BRCA1 gene — gives me a 40 percent to 85 percent lifetime risk of developing breast cancer, and a risk of ovarian cancer that is 30 to 70 percent higher than women who do not have this gene, according to the Mayo Clinic.

My family history of cancer is also downright ominous. Every woman on my mother’s side of the family — including her mother and her cousins — has either had breast cancer or a preventive mastectomy. My mother developed breast cancer just short of her 31st birthday, when I was 18 months old. She has the BRCA1 gene, which is why I decided to get tested.

Debating children
When I first heard the news, I shouted something at my husband, who was in our living room with a friend. Then I hit the shower to sob, holding my breasts and thinking about how some day, ideally far in the future, they would come off.

I spent the next few weeks in denial about when that day would be and how it would affect my life. My husband, George, and I are newlyweds who hadn’t planned on having children for several years — after he completes his Ph.D. and my income as a freelance writer stabilizes. But suddenly, I was in a rush to have babies.

My new knowledge moved up our discussion. I’ve always wanted children and looked forward to breast-feeding. My mother told me stories about how satisfying it was to watch my eyes loll back in my head with contentment during a feeding, and I yearned for that same experience with my child. If I delay childbearing, I’d never be able to experience breast-feeding without cancer looming over my shoulder.

But neither of us is ready to have children right now, and coming to terms with that has been one of many hurdles we face. I’m incredibly sad that I’ll never have the opportunity to breast-feed, but giving it up evades worry about the worst-case scenario of cancer while pregnant. Ultimately, I decided it was better to rip off the bandage than to burn years worrying about how much it would hurt.

A cruel joke
George has been a rock for me during the whole ordeal, doling out hugs and occasionally, martinis. He believes that I should do whatever I need to do to save my life, no matter the consequences. But despite his support, our relationship has faced increased stress.

I’m annoyed with him because through no fault of his own, he isn’t able to give me the type of sympathy I crave. I am not just losing my breasts, I’m losing the way my breasts look in my favorite shirt, the organs that make me a sexual, curvy woman, and I’m losing them unjustly at an age when most of my friends are getting engaged, married or pregnant. As a man, my husband sympathizes, but he can't possibly understand.

Image: Lizzie Stark and George Locke
Courtesy of Lizzie Stark
When newlyweds Lizzie and George learned that she had the BRCA1 gene, it moved up their discussion of having children.

And he's not the only one. It’s difficult explaining why I would choose to have my breasts removed when I haven’t yet been diagnosed with cancer.

In some ways, the genetic test for the BRCA gene is a cruel joke. Yes, it’s incredible that we’re able to laser in on this kind of gene and inform women like me about our choices, but I find none of the options — chemoprevention, surveillance or surgery — to be palatable.

I crossed chemoprevention off my list first. The treatment involves tamoxifen or raloxifene, estrogen blockers that cause temporary, reversible menopause, complete with reduced sexual drive and hot flashes. They don’t eliminate the risk of breast cancer, but could buy me some time to make a final decision. In the end, it was really the reduced sexual drive that deterred me. Why bother keeping my natural breasts longer if I can’t enjoy them?

For me, surveillance includes twice-yearly mammograms, breast exams and blood tests, and at least yearly Pap smears, pelvic exams, breast MRIs and vaginal ultrasounds. It doesn’t prevent cancer so much as catch it early.

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One friend called, trying to lessen the blow of the news and cheer me up about this yearly medical gauntlet. “You’ll build the tests into your routine and you won’t even notice them,” she said. The thought gave me hope.

But as I soon learned, a trip to the mammography office is nothing like a trip to the dentist. I’m not just having my breasts X-rayed — I’m confronting that ominous 85 percent statistic and my family history of cancer. I’m forced to remember that I’m nearly 30, the same age my mother was when she was diagnosed with cancer. I’m forced to remember my great-aunt, who learned of her breast cancer at 32 and just let it kill her, and my grandmother, who survived breast cancer twice and ovarian cancer once.

‘Probably nothing’
During my first post-bad-news mammogram, my technician found a slight thickening in my right breast and decided to ultrasound it. Although the woman performing the procedure told me, “It’s probably nothing,” as I lay on the table with jelly all over my breast, I thought, This is it. They’re going to tell me I have cancer, and I’m going to have to take my breasts off right now. I’m going to go bald from chemo and the book I'm writing will never be finished and my husband will be distracted from grad school and I might die.

Video: Better safe than sorry? At the time, a preternatural calm fell over me, but when I got to my car afterward, I burst into tears, as is apparently now my custom after appointments related to cancer.

The test results I received in the mail failed to allay my concerns. On the form, the doctors had checked a box saying that they’d found something, but that it “probably” was benign. I envisioned a lifetime of tests where “probably” not cancer was as much as I could hope for.

I refuse to live like that.

A decision
I remember the emotional impact of my mother’s long cancer battle on my childhood: the years of treatment, the silence in the house, my inability at the time to understand her fear of death, her anger at getting cancer and the sadness of losing her breasts so young. As a kid, I only knew my mother was sick, but as an adult I feel like I can contemplate the full horror she faced. I have an opportunity my mother never had — I can decide to spare my future children the pain of a hospitalized and sick mother by undergoing surgery now.

That's why I decided to go with preventive surgery.

This November will be my last birthday with my natural breasts, followed by my last Thanksgiving and Christmas. In January, I will celebrate my first wedding anniversary, the last one during which I will have my breasts.

Come spring, I will have a double mastectomy, followed by laparoscopic (laser) removal of my ovaries after I have had children. Removing the breast tissue will reduce my chance of developing breast cancer by about 90 percent, according to the Mayo Clinic.

Unlike my mother or my grandmother, I will be removing my breasts on my own schedule. I will be able to wake up with reconstruction already completed, at least partially. I’ll be able to keep my own skin, and maybe even my nipples, the last vestiges of the breasts I was born with.

Lizzie Stark is a freelance journalist from New Jersey whose work has appeared in The Daily Beast and The Philadelphia Inquirer. She edits the online literary magazine Fringe, and is writing a book about live action role play (LARP).

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