Book chronicles woman's struggle to thwart breast, ovarian 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 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.
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."
Whether to get tested, and what to do if you test positive - those remain highly personal questions, Queller says, and she was distressed that experts couldn't give her firm answers. "Science is outpacing our ability to know how to use it," she now says.
But she has no remorse over the path she eventually 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. (Declining rapidly, she asked her younger daughter, Danielle, if she would grant her mother's dying wish by marrying her boyfriend. "But no pressure," the mother added. And she insisted on spending one of her last days at the mall, exclaiming: "Pearls and cashmere! And bargains!")
Turning later to her own journey, Queller describes how infuriated she was by the genetic counsellor 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.
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.
"If you're 27, single, with no kids, it's not clear that knowing all this would be helpful," Garber says. "You can't control whether the test is positive or negative, but you can control when it's time to know."
Still, she says, increasingly, more people want to know.
"The goal is to empower people to take control of their lives and not wait for cancer," Garber says. "People find a way to put this information into their lives and go on - hopefully without cancer."
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