The Easiest Hard Decision

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Crissy Devea hadn't heard about the breast cancer genes until last year, but she was already well acquainted with cancer itself. Thirteen years ago, when Devea was 15, her mother was diagnosed with breast cancer. Six months after that, her grandfather found out he had prostate cancer. Then, two of her aunts got the bad news, diagnosed with breast and ovarian cancer, respectively. By the time Devea reached her 20s, both aunts and her grandfather had died.

"It sounds outrageous in retrospect, but, at the time, we thought it was all environmental," she says. "We didn't know cancer could be genetic. Or, we just didn't want to know that."

For Devea, a 28-year-old mother of two from Plainfield, Ill., the turning point came in December 2007, when her mother, who'd survived the bout with breast cancer, learned she had ovarian cancer. That was when Devea's doctor brought up the possibility that her family's misfortune wasn't just a series of heartbreaking coincidences.

Family and fate

BRCA1 and BRCA2, commonly referred to as the "breast cancer genes," are actually two genes that everybody has. We get one copy of each BRCA gene from each of our parents, and the genes play an important role in telling the body how to control cell growth and division. "When we say a person has tested positive for BRCA1 or BRCA2, what we really mean is that they've tested positive for an abnormal version of those genes," says Rachael Brandt, a certified genetic counselor at the Philadelphia-area's Main Line Health Hospitals who specializes in hereditary breast cancer and who serves on the professional advisory board of the Web site www.breastcancer.org.

An abnormal BRCA gene cannot aid in preventing abnormal cells from growing out of control and becoming cancerous. Although an abnormal BRCA gene isn't the only genetic factor that leads to cancer, its presence drastically increases the risk. Brandt says women with an abnormal BRCA1 gene have up to an 87 percent lifetime risk of breast cancer and a 54 percent risk of ovarian cancer. Abnormal BRCA2 genes carry about the same breast cancer risk, but a lower ovarian risk—about 27 percent. In contrast, the National Cancer Institute estimates that the average American woman has a lifetime risk of breast cancer that's just over 12 percent. The average risk for ovarian cancer is even lower.

An ounce of protection

That December, after her mother's second cancer diagnosis, Devea was tested for the breast cancer genes. The waiting period was the longest three weeks of her life. But when the results came back positive for BRCA1, Devea knew immediately what she wanted to do.

"I wanted a preventative double mastectomy," she says. "It was a given. There was no question for me. Just seeing all of this cancer in my family and knowing my risk. It's not an if, it's a when. And it would be too hard to see my kids watch me go through that."

But getting the treatment she wanted turned out to be easier said than done. Devea's genetic testing was arranged by her primary-care doctor. Unaware of the option of genetic counseling or the help genetic counselors can provide in dealing with insurance companies, Devea told her insurance company she wanted a prophylactic (preventative) double mastectomy. They said, "No." Officially, despite her risks, they said the surgery didn't count as medically necessary. Devea spent the better part of a year fighting the decision, but was only able to reverse it after she found a genetic counselor who convinced the insurance company that the cost of a mastectomy now was cheaper than the cost of cancer (or cancers) later. Her surgery is now scheduled for December 17, 2008.

For Devea, having a date is both a blessed relief and bittersweet disappointment. "I think about it sometimes and it does make me sad, knowing there's a countdown to losing my breasts. I've been looking at them more and thinking about taking photos so I have something to remember them by," she says.

For the most part, her family and friends understand and support her decision. There are a few people she knows who don't get it. But Devea, like many women who are positive for BRCA mutations and have watched relatives suffer, says these peoples' objections do nothing to make her question her decision. "I have friends who think it's really radical. But if they were to live my life, going to 3 funerals and viewing 6 cancers in the past 15 years … I'll do anything I can to avoid it."

By this time next year, Devea will have new breasts and a renewed belief that she'll be alive to pass on an important bit of advice to her children: Get tested and take the steps you feel are necessary to protect yourself.

>> Why one woman decided to keep her breasts despite the risk

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Maggie Koerth-Baker is a freelance writer and a contributing editor to mental_floss magazine. Her work has appeared in the Associated Press, AARP: The Magazine, and Health.