In a new memoir arriving in stores this month, television writer Jessica Queller (Gossip Girl, Gilmore Girls, Felicity, One Tree Hill) recounts her personal encounter with medical science. Four years ago, after watching her mother's struggle with breast cancer and painful death from ovarian cancer, Queller, now 38, tested positive for the BRCA-1 gene mutation, known as the "breast cancer gene." She faced these terror-producing statistics: an 87 percent chance of developing breast cancer, a 44 percent chance of developing ovarian cancer—and the possibility of slashing both risks by 90 percent by choosing radical surgeries to remove her breasts and ovaries. Young, single, and hoping to get married and have children, Queller confronted excruciating life and death choices, detailed in Pretty Is What Changes: Impossible Choices, the Breast Cancer Gene, and How I Defied My Destiny (Spiegel & Grau). She spoke about them to U.S. News. Excerpts:
You had a double mastectomy and have decided to get pregnant, through a sperm donor, and have your ovaries removed after you turn 40. How have people you know judged your decisions?
These issues, cancer and having children, touch such a nerve in people. I've heard from friends how other people, behind my back, discuss my decision to have a baby. They are outraged at my decision to be a single mother. And friends who have read my book have told me they are embarrassed to admit it now, but they thought I was crazy to have my mastectomy. Now they understand. I got a bad biopsy report after my mastectomy—I already had precancerous changes. I don't have any doubts about my decisions.
What do you hope to accomplish by telling your story?
I hoped to give other women courage. As a youngish, single woman, my fears were that having the surgeries would ruin my life, I would feel deformed, and never be attractive. My fears were enormous but turned out to be not well founded. Perhaps I'll inspire women who normally would be ostriches to get tested, to get better screening, and spare them the suffering I watched my mother go through. I don't like to proselytize about such a very personal decision. But every single woman I've met who's been through it agrees: We love our new breasts and feel great. I feel completely comfortable in my body. Plastic surgery is so advanced these days; they put you back together so beautifully. The brutal mastectomies of our mothers and grandmothers are simply not the case anymore. I want to make others aware that if they get this knowledge and this surgery, it's not that bad. Cancer is worse.
One of your themes is that science has outpaced our understanding of what to do with the information. What has that meant to you?
We're living in a brave new world. For example, I can select out embryos that carry the breast cancer gene. Had this technology been available in 1969, I would have ended up in the trash can. Would I, in good faith, choose embryos that don't have the mutation and destroy the others? Would taking action to ensure that my unborn child would not have to go through the terrors my mother, sister, and I have suffered be the responsible choice? Or is it immoral to extinguish a life merely because it carries a gene I myself live with? I've had people tell me it is immoral to bring a child into the world without a father. How will a child respond to the news that their father is Donor Number 1932, and he or she may have 40 other siblings in the world? One step has so many ethical ambiguities.
How did your research change your mind about not having prophylactic surgery?
I was in denial about how serious my situation was until I went online to research an op-ed piece for the New York Times about having the gene. I spent a month reading articles and medical data. I learned about BRCA-positive women getting cancer in their 30s. My mother was 51 when she got breast cancer, and I had thought I had plenty of time to decide what to do. I was wrong. I am so grateful that I had this knowledge and could avoid breast cancer.
Do you think of your life in two parts: before and after you knew you had the gene?
My life is separated by my mother's death and illness more than by the test. I'm still completely traumatized four years later by her death. The cumulative experiences put my life in perspective. My work is very stressful. I wish I had a husband or boyfriend. But the only thing not tenable to me is illness. That's a pretty strong world view that I didn't have before, about not sweating the small stuff.
Your title comes from Stephen Sondheim lyrics: "Pretty isn't beautiful, mother. / Pretty is what changes / What the eye arranges is what is beautiful." What do those lyrics mean to you?
Growing up with a beautiful fashion designer mother, there was so much emphasis in my house on looking pretty. Pretty is ephemeral, prettiness changes, it is not true beauty. True beauty is internal and much more profound. As my mother's illness progressed, her vanity fell away and her real spirit and her love for her children took over. She would have done anything to live.