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 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 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?
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, 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, 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 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.
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." (The main test factor is a strong family history of the disease.)
Testing has been increasing by about 50 percent 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 percent of those who have the mutation. There are still lots of people who don't know about the test." The company recently began advertising to consumers. The test costs about $3,000 and is covered by insurance in most cases. A very small percentage of men also get tested.
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."
Coming to terms
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 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 on ABC. By then, she had decided on surgery. Reaction was swift from both sides. Some suggested she instead take mushroom supplements or glyconutrients. One man wrote: "You could get hit by a bus the week after surgery, and put yourself through all this for naught!"
Queller has had three operations. She's saving the last (the 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.
Timing is important
For every woman, the calculation is different, says 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."
Queller ends her book with an exhortation to other women to arm themselves with knowledge. "We are living in a DNA age in which scientific advances give us new opportunities to live," she says. "Seize them." 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."