BRCA Gene: One Woman's Decision
Jessica Queller, a Los Angeles-based TV writer, has written a book (Pretty is What Changes), detailing her response to a discovery she made four years ago: that her breasts were ticking cancer time bombs.
Queller, who underwent BRCA gene testing after her mother died of ovarian cancer, was told she was positive for the BRCA-1 gene, and had an 87 percent chance of developing breast cancer–as well as a 44% chance of developing even deadlier ovarian cancer. “The doctor told me the gold standard for prevention would be prophylactic surgery of my breasts and ovaries,” said Queller, in a National Public Radio interview Tuesday. “It was an outrageous proposition to me at the time. It took me a year of research, and a year of assimilating the information, to come around to considering something like that.”
Queller eventually did have a double mastectomy and reconstruction. “I had terrible fears that I’d feel deformed after the mastectomy. I felt I wouldn’t be attractive to men, wouldn’t want to be touched…” she said. “People thought I had post-traumatic stress syndrome from my mother’s death to even consider a double mastectomy,” Queller added.
But post-reconstruction, Queller’s whole outlook has changed. “I feel completely comfortable and at home in my new body,” she told NPR interviewer Renee Montagne. “Almost every woman I’ve spoken to [who’s had this procedure] agrees. Fear is the biggest thing; it just doesn’t seem like that big a deal on the other side.”
Now, Queller is 38 years old, single, and wants to have a baby. Age 40 is considered the “prudent” age to remove your ovaries if you’re carrying the BRCA gene. So Queller says she’s decided to get pregnant via a sperm donor, and become a single mother, then have her ovaries removed.
In an interview in "US News and World Report," she speaks of the “ethical ambiguities” of her situation: with the scientific ability to “select out” embryos with the BRCA gene, should she “choose embryos that don’t have the mutation and destroy the others? Or is it immoral to extinguish a life merely because it carries a gene I myself live with?”
The issues Queller has dealt with, and continues to face—prophylactic mastectomy and removal of her ovaries, choosing to select BRCA-free embryos—are huge. And potentially life-shattering. As a young, single woman, one who wants to marry and have children, how do you choose between an 87% chance of cancer, and the irretrievable loss of both your breasts (your self-perceived beauty) and your ovaries (your future children)?
As a breast cancer survivor, what advice would YOU give a young, single friend who’s discovered she carries the BRCA gene? The simplest advice would be “Yes, have the mastectomy and have your ovaries out,” or “No, wait and see what develops.” But this is really too facile; too easy.
A more thoughtful response might be to encourage her to look deep inside herself, and way, WAY down the road. Is she so fearful of what reconstructed breasts would mean to her love life that she’ll risk almost certain cancer to keep her real ones? Is her desire to have children so potent that she’s willing to take a 50-50 chance on ovarian cancer, and probable death?
Or can she figure out a way to walk some scary tightropes? Having a double mastectomy and reconstruction with the belief that she’ll still be a desirable woman, still be able to date comfortably. Becoming a single mother now, thus having her ovaries out more quickly; or waiting, hoping to become involved in a relationship that results in children before she’s 40. And, to me, the most gut-wrenching decision of all: knowing that she can identify unborn children who carry her BRCA gene, and deciding what to do with that knowledge.
At the end of the day, these decisions are like so many cancer decisions we’ve all had to make. You just simply… decide. One way or the other. Then live with your decision. You have no choice but to move forward, so you do.
But Queller’s situation, and that of all BRCA carriers, is more extreme than what most of us have faced. These women are not only trying to control their own destiny, their own life and death; they also have the ability to “play God” with potential children.
Making decisions with this level of consequence must be insanely stressful. Are you a BRCA gene carrier? Tell us your story: the decisions you had to make, how you made them, and how you handled the process.
Update: In the end, Jessica Queller decided to have a baby via anonymous sperm donor. In an NPR interview aired June 23, 2009, she said she was currently 4 months pregnant, and had just found out the child is a girl.
When asked about her daughter's chances of carrying the BRCA gene, Queller said she'd discussed the situation extensively with her oncologist. "She told me that the medical landscape will be very different in 30 years," said Queller, referring to the timeframe when her daughter might begin to worry about breast and ovarian cancer. "I'll urge her to be tested [for the gene], but not before she's 20 or 25," added Queller.