Editor’s note: Jessica Queller is the writer for TV shows such as “Gossip Girl,” “The Gilmore Girls,” and “The Carrie Diaries.” She is also the author of “Pretty is What Changes,” a novel that chronicles her journey with losing her mom to breast cancer, testing for the BRCA gene mutation (the gene that suppresses tumors), and eventually making the difficult decision to get her breasts and ovaries removed.
HLN: In your book, you say that testing positive for the BRCA gene mutation has changed your life forever. How so?
Jessica Queller: I always imagined I’d fall in love and have a conventional family. I was working really hard to have a TV writing career and I finally had my dream job — I felt like my life was about to begin. And when I was 31 and my mom was diagnosed with cancer, my world stopped. I’m dating, I’m making money, and my mom only has five years to live? (She only lived for two). I dropped everything to be with my mom. From 31 to 33, I watched my mom slowly deteriorate and die. Then a year of grieving. When I was just about to start again, I was 34 and I find out I have this gene mutation. That dominated my life from 34-40. I never got a chance to be carefree or go to dinner parties or find the right guy. I had to take the bull by the horns and really assess what I was willing to do in order to not get cancer.
HLN: What was it like to hear that you tested positive for the BRCA gene mutation for the first time?
JQ: It was terrible. Normally, before you get tested, you meet with a genetic counselor, get all the education in advance, and you’re not supposed to get the results on the phone. I broke all the rules and didn’t get counseling, because at that time, the testing was so new, I was certain I didn’t have the mutation. When the doctor called, it was a very unusual situation. The results were shocking to me. When he told me I tested positive, I asked, “Wait, positive is bad, right?” For a second, I thought positive was a good thing. I didn’t understand what it meant. I thought I would just have to be more vigilant about screenings than other women. A double mastectomy wasn’t even in the realm of possibility for me. But he told me to see an oncologist immediately. It was my fault for not doing my due diligence.
HLN: You were faced with a pretty tough choice: Starting a family or giving up the chance to have one in order to beat cancer. How did you decide to do the preventive surgery?
JQ: It took me a year of soul searching to decide to do the surgery. I spoke with so many oncologists, and they all said to do the surgery. Eventually I realized that even if I did screenings every three months instead of the surgery, I would just be waiting until I have cancer. It just became logical; I had watched my mom go through chemo so many times, which was excruciatingly painful, mentally and physically. I watched her die. I was haunted by her suffering. All I knew is I did not want cancer and realized surgery was better than cancer.
HLN: Have you already had the surgery?
JQ: At 35, I had the double mastectomy. It didn’t mean I couldn’t have a baby, but it’s such an unsexy topic — will someone not want to date me because of it? Am I going to feel unbeautiful? I had to reclaim my own notion of what it is to be a woman and to be beautiful.
HLN: What happened to your plans of having a family?
JQ: I did have a boyfriend at the time whom I almost married, but that relationship fell apart. I was 37 and I knew I had to have my ovaries out by 40, so I didn’t have the luxury of dating. I decided to just go to the sperm bank and have a baby on my own and worry about love later. So now I’m a single working mother. My daughter is now 3-and-a-half. She’s perfectly happy — we have a little fantasy life.
HLN: How did you find the strength to stay positive throughout the two surgeries? What kind of support did you have?
JQ: I have to say, I started out in a major depression. My life was split in half when my mom was ill and died — not when I found out I had the gene mutation. The worst thing was watching my mother suffer, so I was in a dark depression after that. The surgeries were an extension of the mourning I was already doing for my mom. I had to really evaluate what’s important to me and what I care about, and that’s being a mother and wanting a child. Losing my mom gave me perspective about how short life really is. And my friends rallied around me like I was getting married. They flew in from all over the country and were very supportive. I have the most amazing group of friends and my sister and dad, of course.
HLN: Are you healthy now?
JQ: I’m totally healthy, I never got cancer. When they did do my surgery, though, they found pre-cancerous tissues, so it’s a good thing that I got the surgery — I would have had cancer otherwise.
HLN: How far has society’s attitude come toward breast cancer and preventive surgeries?
JQ: People used to ask me all the time, “Are you crazy?” That was the general thought back in 2004 — if you don’t have cancer and you’re removing your breasts, you must be crazy. I knew I wasn’t because I’d done all the research, but not many had heard of the gene mutation at that point. Between then and now, it’s been written about so much that it doesn’t sound as alarming.
HLN: What would you say to other women who are thinking about getting genetically tested and going through the preventive surgery instead of getting screenings?
JQ: Do not be scared to get information that could save your life. It sounds so scary, but it sounds worse than it really is. If you’re otherwise healthy, it’s just cosmetic surgery, and reconstruction is pretty great these days. Angelina Jolie is doing a great service to women — she’s one of the most beautiful women in the world, yet she values her life more than her breasts. The fear that I had is that I’ll never be beautiful again or somehow be stigmatized, but for an international sex symbol to do this — no one will ever say Jolie’s not beautiful. This will empower women to do what they need to do to stay healthy.