Defying destiny: Book chronicles woman's struggle to avoid cancer

NEW YORK -- At age 35, Jessica Queller was the kind of woman it's hard not to envy. Bright, funny and attractive, she was a TV writer with a great Hollywood gig and loads of friends.

Yet one sunny morning, Queller suddenly faced an overwhelming life-or-death decision.

A few months earlier, without much forethought, she'd taken a blood test for the BRCA "breast cancer gene" mutations. She was so confident she'd test negative that she skipped any genetic counseling beforehand.

Bad idea. On that morning in 2004, Queller called the lab from her desk at "Gilmore Girls" and was told by a gruff voice that she'd tested positive for the BRCA1 mutation. Translation: She had up to an 87 percent chance of getting breast cancer by age 70, and up to a 44 percent chance of ovarian cancer, too.

What would you do if someone told you, in the prime of health, that you had a good chance of getting a deadly disease? Would you even want to know? And how far would you go to prevent it? Is ignorance sometimes better than knowledge, if you don't know what you'd do with that terrifying knowledge?

These are questions that women have been facing with increasing frequency as genetic testing for hereditary breast cancer (about 10 percent of all cases) becomes more commonplace every year. A decade ago when the BRCA test was introduced, those tested numbered in the hundreds. This year, a projected 100,000 people will take the test, about 15 percent of them testing positive, according to Myriad Genetics Inc., which owns the patent on it.

If a woman tests positive for a mutation, what does she do then? Some opt for rigorous monitoring. Others, like Queller, now 38 and working on the CW series "Gossip Girl," choose a much more aggressive approach. As she recounts in excruciating detail -- sprinkled with some welcome humor -- in her new book, "Pretty is What Changes" (Spiegel & Grau, $24.95), Queller decided to have both breasts removed to stave off cancer. The ovaries will come out too, before she is 40.

Queller isn't the first person to have made such a drastic decision. But she is part of a generation of women who are taking advantage of knowledge that was unavailable to their mothers and grandmothers. Queller's own mother, who had breast cancer and then died of ovarian cancer in 2003 at age 60, died without knowing the test existed.

Doctors say testing has become more common only recently. "We do now have data that pretty strongly suggests that if a woman chooses to have her breasts or ovaries removed, they drastically reduce the chances of getting breast cancer," says Dr. Eric Winer, director of the Breast Oncology Center at the Dana-Farber Cancer Institute in Boston.

Also, fears that health and life insurance companies would discriminate against those who test positive have largely not materialized, says Dr. Kelly Marcom of Duke University's Hereditary Cancer Clinic.

The test costs just over $3,000 and is covered by insurance in most cases. A very small percentage of men also get tested.

Queller says she has no remorse over the path she took.

"They put me back together again," she says of the surgeons who removed her breasts. "It wasn't simple, but compared to going through cancer? Oh my God, no question."

Queller spends much of her book on the painful death of her mother, a lively and fashionable woman with an outsize personality. Turning later to her own journey, Queller describes how infuriated she was by the genetic counselor who, after recounting each terrible statistic, asked: "How does that make you feel?"

It made her feel lousy. For a 35-year-old woman who had yet to find her partner in life, the thought of losing her breasts, an obvious part of her sexual identity, was overwhelming. And the prospect of losing her ovaries was even more daunting, because she'd always wanted to bear children.

She poured her anguish and uncertainty into an op-ed article for the New York Times, which led to a "Nightline" segment. By then, she had decided on surgery.

Queller has had three operations. She's saving the last, an oophorectomy (removal of the ovaries) for when she turns 40. "That means that somehow, in the next year and a half, I need to have a child," she says. A promising post-surgery relationship didn't last -- "no fairy tale ending," she says wistfully -- and so she has turned to a sperm bank. She is not yet pregnant.

For every woman, the calculation is different, emphasizes Dr. Judy Garber, director of the Cancer Risk and Prevention Program at Dana-Farber. Testing is not for everyone, she notes, and timing is crucial.

Queller ends her book with an exhortation to other women to arm themselves with knowledge. And yet she points out, in conversation, that she doesn't mean to imply her choice is for everyone.

"I don't believe in proselytizing anything," she says. "But I am definitely hoping that for women who really would want to take this step, I can help them not be afraid."