Book chronicles woman's struggle to thwart genetic destiny: breast, ovarian cancer

By Jocelyn Noveck, THE ASSOCIATED PRESS
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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 counselling 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 per cent chance of getting breast cancer by age 70, and up to a 44 per cent 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 per cent 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 per cent 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 humour - in her new book, "Pretty is What Changes," 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.

"Many women who are at high risk still haven't heard of this test," Queller said in an interview.

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. As a result, "each year we've been dropping the bar on who gets tested." (For those who don't have cancer already, the main factor is a strong family history of the disease.)

Testing has been increasing by about 50 per cent a year, says Bill Hockett, a spokesman for Myriad, which is based in Salt Lake City. Still, he says, "We feel like we've only found a few per cent of those who have the mutation. There are still lots of people who don't know about the test."

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