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BRCA positive woman takes big step to prevent breast cancer due to family history
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As everyone knows, October is breast cancer awareness month. It seems like everything from NFL players’ cleats to the Empire State Building turn pink to promote awareness. And since finding out that I have a BRCA 1 mutation, I have become quite aware.
Unlike many women with BRCA mutations, I do not have a family history of breast and ovarian cancer. If my uncle had not passed away in 2006 at the age 50 of pancreatic cancer, I would have never known. As pancreatic cancer is uncommon in healthy middle-aged men, my uncle underwent genetic testing and was found to have a mutation on the BRCA1 gene.
In the months following my uncle’s death, my family was too traumatized to think of the repercussions of this genetic mutation in our family tree. However, I would occasionally bring up the subject of genetic testing, but everyone was hesitant. Unlike other cancers, there is no screening protocol or early detection method. Knowing whether or not you are predisposed to pancreatic cancer doesn’t really change your odds of fighting it.
In May of 2013, Angelina Jolie wrote her now famous op-ed piece in the New York Times detailing her decision to undergo a preventative double mastectomy to reduce her risk of breast cancer. Angelina boldly shared her story to inspire high risk women to get tested and take control of their health. It worked and I made an appointment with a genetic counselor.
Meeting with a genetic counselor was the best decision I made throughout this process. She sat down with me for an hour before even taking my saliva sample to discuss my family history, the test and its implications. Once my results were in, she spent another hour with me and my husband to discuss the associated risks of a BRCA 1 mutation and what I could do about them. I have heard stories of people who have received their positive results over the phone followed by: “Call me when you want your ovaries out” and I’m so grateful I didn’t have that experience.
When you break your leg, you go to an orthopedist, they take an x-ray, give you a cast and all is well in 6 weeks. When you have a high risk of breast and ovarian cancer, there is no immediate next step and that terrified and overwhelmed me. I was lucky enough to find two organizations (Sharsheret and Bright Pink) that matched me with women in my similar situation who lived nearby that were able to talk me through the next few steps. Using doctor referrals from these women, I scheduled appointments with breast and gynecological surgeons.
In the weeks before I could speak with a doctor, my family and I searched the web for research studies and articles with the goal of determining a personalized risk percentage. With my mutation, I had a 56-87 percent chance of developing breast cancer before the age of 70 and a 27-44 percent chance of ovarian cancer, but those are huge ranges. Unfortunately, science has not been able to take into account risk reducing behaviors (birth control pills, breast feeding, etc) to confidently predict an individual woman’s chance of developing cancer.
My doctors couldn’t give me a more accurate risk assessment either, which I found extremely frustrating. However, they did agree that at the age of 35, if I was done having kids, that I needed to remove my ovaries and probably my uterus as well to reduce my chance of cancer. As for avoiding breast cancer, they felt that screenings were more reliable and could detect cancer early enough for me to survive it,
After obtaining as much information as I could, I felt like I had several options, but didn’t like any of them. I didn’t want to go into menopause, but I didn’t like the low survival rate of ovarian cancer and its unreliable screenings. Although a new and perkier set of boobs sounded like a benefit, I was terrified of a multi-phase mastectomy with reconstruction, but I didn’t know if I could handle years of biannual breast screenings. During this difficult time, I felt checked out from my life and my family. I couldn’t focus on anything but myself and that disgusted me. I became a hypochondriac; convinced that every cramp or lump was cancer.
After several stressful weeks, I had my “a-ha moment.” I realized that I would never get enough evidence or research to completely justify a decision, but I had to make one that I could live with. With the information I had, I decided to have both a hysterectomy and mastectomy with reconstruction in the next year. I decided that I never wanted to have to fight cancer, I never wanted to regret not having the surgeries preventatively, and that I wanted to move on with my life. With a plan in place, I felt empowered and no longer scared. My friends and family said I was brave, but truthfully I was terrified of dying from cancer and I was making the best choice I could.
In the last year I’ve had four surgeries. It’s been challenging for me and my family both physically and emotionally. I have young kids and I couldn’t have been able to manage without incredible support from friends and family. I wish I could say that I’ve never questioned my decision, but that wouldn’t be true. However, I’m forever grateful to have been able to make the choice myself and not have cancer do it for me.