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Defying Destiny: An Interview with
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| Photo by Cara Buono |
What motivates a woman to have her breasts removed before she even has cancer, and plan to do the same with her ovaries in the near future? For Jessica Queller, a successful TV writer (Gossip Girl, The Gilmore Girls, Felicity and One Tree Hill) and author of the book, Pretty Is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny, the answer was simple: her mom.
Queller watched her beautiful, glamorous fashion-designer mother fight and beat breast cancer, only to see her life claimed by ovarian cancer in the end, at the age of 60. Almost a year later, at the age of 34, Queller tested positive for the BRCA1 gene mutation. She wrote that she faced odds of an 87 percent lifetime risk of breast cancer and a 44 percent risk of ovarian cancer. To make her ultimate decision to have a prophylactic mastectomy, she thought of what her mother would have wanted: "Her will to live was so strong and she loved life so intensely that there's no question that my mom would have done anything to live...she would absolutely have wanted her daughters not to gamble with their lives." Her sister also went on to have a prophylactic mastectomy after testing positive for the gene. Now 38, Queller plans to get pregnant before she has her ovaries removed at age 40, and says she has "no regrets."
What do you wish you had known before you took the BRCA test?
It was very unwise for me to take the test without getting any counseling or education. I was really cavalier about it because I was so super confident that I would not have the gene. I thought why bother spending a day getting counseling and education because I'm very busy...I know I'm not going to have this...so it was completely my fault. I just went to a lab, so when I got the results, I had no idea what I was getting myself into, what the repercussions were, what that meant. I would not recommend that to others!
So you should get genetic counseling before taking the test?
Be counseled either by a doctor or a genetic counselor before taking the test so that you really understand in advance in the event that you do test positive, what your choices are.
Who should consider taking the test?
Anyone at high risk of breast cancer due to a strong family history. If you have mothers, sisters, aunts, or if you have one single relative like I did who got cancer early. And early is considered around age 50 or younger (cancer meaning breast or ovarian cancer because the BRCA gene puts you at exponentially high risk for both.)
How did watching your mother fight this huge battle with cancer influence your decision?
I always tell everyone that this whole book is about my mother. I wrote the book for my mother. People often ask me, "Oh my God, was your life cut in half when you found out that you carried the gene? Or when you had the mastectomy? Was it like before and after?" And I always answer, "No. My life was already cut in half after watching my mother suffer and die in that way...". And for me, that is the trauma that haunts me. Had I not witnessed that kind of suffering from cancer in my own mother, there's no way I would have made the decision that I made. So for me, it's all about my mom and it's all about the horror that I witnessed. That stays with me, every single day. And then when I was faced with possibly facing cancer myself, I just had in my mind what my mother went through with cancer and said there's absolutely no way I'm gambling with cancer.
What was the major turning point toward making this decision?
I went to see my first breast surgeon and I asked him a million questions. And I asked, "Am I overreacting? If I do surveillance vigilantly...what is the best case scenario? If I do get cancer and we're watching it and we catch it really early, what would happen?" And he told me that in the best case scenario, if we found the earliest possible stage of the cancer on the mammogram or the MRI, and I needed radiation but not chemotherapy, he would still recommend a double mastectomy. That's because for anyone with the BRCA mutation who has even the earliest stages of cancer, the chance of the cancer coming back is so high. So at that point...I said, "This is crazy. I'm going to have to be screened every three to six months, have the anxiety of waiting, waiting to see if I get cancer. Then, even if I get the earliest stages of cancer, I have to have the surgery anyway, and then I always have to worry that I've had cancer and it might have spread. If I'm going to have to have the surgery anyway, I might as well do it now while I'm healthy. I don't have to worry about the cancer having spread."
What was the hardest part of surgery and reconstruction?
The worst part was the psychological fears. I had never had any surgery before. I didn't know what to expect. I didn't know how it was going to turn out or how I was going to feel afterwards. The physical stuff really wasn't that bad, other than the inconvenience of interrupting your life! But it was more the psychological anxieties that really tormented me. So I hope and pray that the book I wrote will ease other women's anxieties--knowing that it all actually does work out well on the other side--that there was no need to suffer, to worry as much as I did.
How have people reacted to your story?
The climate has changed so dramatically. Four years ago, no one had heard of this; it's not something that was known at all. Some of my friends thought I was just nuts, that I was acting rashly out of post-traumatic stress. And now four years later, it's been all over the media. And when I was facing this at 34, and then 35, I was on the message boards trying to find young single women who were going through this, and I couldn't find anyone. There were a lot of women talking about it, but they were all married, they had kids, they were at a different stage of life. I went to speak at Be Bright Pink, this amazing organization, specifically for young, high risk women and there were hundreds of young girls who had taken the BRCA test...I couldn't believe it. And it was wonderful. It was so positive. I'm a really, really big fan of this organization. These girls are like the most beautiful, smart sorority.
Do you have any advice for other women who are going through this?
If you are at high risk and you have the inclination to take the test and get the information and you're scared, the main thing I hope that the book gets across is that you don't need to be scared and it really is more than okay on the other side. Yes, there are scars, everyone has some kind of scars, but I've not personally met a single woman who's been unhappy with her results. The main thing I want to express that if you want to protect yourself but you're afraid--I hope to inspire people not to be afraid--that it's really not so bad, and it's far better than cancer.
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