Why I Had My Breasts Removed

Stephanie Queller was an unreconstructed glamour girl who worked as a fashion designer and wore Manolo Blahniks and rhinestone-studded tank tops. Cancer, first in her breasts and then in her ovaries, destroyed her body, leaving her unable to eat or care for herself, before killing her at the age of 58. Eleven months later her daughter Jessica, a writer for the TV show "Gossip Girl," tested positive for the breast cancer gene mutation BRCA1, at the age of 34. Queller learned that she had an 87 percent chance of developing breast cancer and a 44 percent chance of developing ovarian cancer. At the time she was hoping to get married and start a family. Instead she had to decide whether to remove her breasts and ovaries to reduce her odds of developing the disease. In her new memoir, "Pretty Is What Changes," Queller writes that "deciding whether to go to law school or take one's chances as a writer is a hard decision … Deciding to cut off your breasts when you don't have cancer and possibly never will? To me, that was insanity." Yet she ultimately decided to have a prophylactic double mastectomy, reducing her risk for breast cancer to just 3 percent, and plans to have her ovaries removed before she turns 40. (She's now 38.) Her sister Danielle also tested positive for BRCA and had a prophylactic mastectomy as well. Queller spoke to NEWSWEEK's Jennie Yabroff about her choice, her plans for children and her hopes for the future of breast cancer research.

NEWSWEEK: Your job as a writer for a show about a bunch of rich teenagers is pretty incongruous with the experiences you write about in your book. Do you think about the show and your job differently now?
Jessica Queller:
I have always used my job as a break from the pain and trauma of my actual life, so it's been more of an escape for me to make up stories. The characters on the show live quite sheltered lives; their biggest problem is what boy doesn't like me today. There's an innocence to that world that I'm nostalgic for. And my mother was very similar to the character of Eleanor; she even looked like that actress. Now I'm nostalgic for her glamour and her material interests.

In your book you write about your mother's love of fashion and beauty. Did your own experience with cancer change your ideas about the importance of appearance?
I think before I made the decision [to have the surgery], I was terribly fearful that I would never feel normal or whole again. Those fears were not founded, and I feel quite normal, put back together again. I do have scars. I do feel self-conscious taking off my clothes. But I had to decide that the risk of feeling unbeautiful in my body was worth taking. The sacrifice of my natural body was worth health and life.

Do you ever miss your old breasts?
Not really. I had a lot of issues with them because they were quite large, and I had to strap myself into bras constantly. It's been quite a pleasure not to do that anymore. My friends were so amazing. For my birthday right after the [reconstructive plastic] surgery, my girlfriends all bought me dresses by Catharine Malandrino, Marc Jacobs, designers I never could have worn before. Now I never ever wear a bra; I'm quite free. That's been a nice silver lining.

Were there times when you wished you'd waited longer to take the test, so you wouldn't have had to deal with all this so close to your mother's death?
No, because the pathology report showed I already had precancerous changes in one breast. I'm so lucky I took it when I did. But it's very important to me not to proselytize. This is such a personal decision. I've met many people who are just doing surveillance [by getting frequent mammograms]. There are tons of young people who have the gene but say they're just not ready to make the decision. Living that way is a different kind of torture. Every three or six months you're terrified the mammogram is going to reveal something.

What was the hardest part of the book to write?
Writing about my mother. For me the whole story, everything's about my mother. People ask if my life was split in half when I found out I had the gene, but I always say it was split in half by her death. The worst part of everything was what had happened to my mother … I'm still so actively traumatized by her death. Somehow my sister and I felt our mom would want us to spread the information. If by telling this story I can help other women in some way, then my mom's death was not in vain.

Was it difficult to write so honestly about your desire for a husband and a child?
It's all very exposing. I'd normally be the last person who'd ever talk about her anatomy. So writing those parts about my breasts was embarrassing. But I've always been very upfront about wanting a baby. I'm in a very difficult situation. I broke up with the guy who was my boyfriend in the book a year ago, and at that point I decided going on dates with someone new and saying, "Are you ready to have a baby in the next three months?" was untenable. So now I'm doing artificial insemination. I've tried several times. I quite honestly hoped I'd be pregnant by the time the book came out, but so far it hasn't worked.

You write about the possibility of doing preimplantation genetic diagnosis, which would mean creating embryos outside the womb and testing them for the BRCA gene. As you write, "Had this technology been available in 1969, I would have ended up in the trash can." Have you come to a decision?
So far I've decided no. I didn't feel I'd be at peace with selecting out embryos. If I do get pregnant and have a girl, I pray that by the time my daughter is in her 30s they'll have some kind of cure for breast cancer or much better alternatives than now. That's what I'm hoping for.