BRCA JOURNAL: CHAPTER TWO

I was going to end the conversation there, but she began to tell me about her prophylactic mastectomy. She told me how good she looked now that her breasts were “re-done” and she was thinner. She told me that immediately following her mastectomy, a plastic surgeon reconstructed her breasts using fat from her buttocks. It's funny to me now that I I've done so much research on the topic, but at the time, I had no idea that you could have your breasts reconstructed at the same time you had them removed. I certainly didn’t know that you could use your own fat to reconstruct your breasts...

My friend -- I now consider her my friend, not just the sister-in-law of my friend -- admitted that it was a stressful decision to have a mastectomy, but she told me that she feels great, looks great and lives with a complete sense of relief. Though she knows she could be hit by a car tomorrow, she walks a little lighter because she has done everything in her power to prevent cancer. She gave me some great advice on books to read about mastectomies, reconstruction and sudden menopause. She also told me about an organization she was involved in called FORCE: Facing Our Risk of Cancer Empowered (www.facingourrisk.org). It was the only group I could find to help people like me, who don't have cancer but are at a high risk of getting it.

After talking to my friend, I began to think a mastectomy could be my salvation. Because a mastectomy would almost entirely eliminate my risk of breast cancer, I could avoid having my ovaries out. I had only considered having my ovaries out because it would lower my risk of breast cancer; I wasn't worried about ovarian cancer because none of my relatives had had it.

So I began to do my research and talk to doctors. I learned everything I could about mastectomies and reconstruction. I learned about a procedure called a DIEP flap reconstruction that seemed perfect for me. First a breast surgeon would remove all of my breast tissue; then a highly skilled plastic surgeon would use the fat and skin from my abdomen to recreate my breasts. Because my own tissue was being used, my breasts would have a natural look and feel. It sounded like a win-win -- I could have my breasts done and get a tummy tuck.

But like they say, “Ignorance is bliss.” My oncologist referred me to a breast surgeon and a plastic surgeon who could perform the DIEP flap reconstruction. When I met with the plastic surgeon, I learned that if I chose to have a mastectomy, it would not be like having my breasts “done.” For one thing, the surgery for the mastectomy and DIEP flap reconstruction I was considering would take approximately 15 hours. I would have to spend a day in the ICU and a week in the hospital before a painful six-week recovery. There would be scars on both my breasts and my abdomen. But I wasn’t completely deterred. I could avoid menopause!

When I met with the breast surgeon, she agreed that a prophylactic mastectomy would be appropriate given my BRCA2 mutation and family history. But she adamantly insisted that I also have my ovaries removed because of my increased risk of developing ovarian cancer. She said that because of the difficulty of detecting ovarian cancer, 70% of women don’t catch it until it is in an advanced stage. To my chagrin, my genetic oncologist agreed. They both felt that they could catch any breast cancer that might develop early enough to give me a good prognosis, but if I developed ovarian cancer, my chances of survival wouldn’t be great.

I planned to seek other medical opinions before making any final decisions about proceeding with either an oophorectomy or mastectomy, but in the meantime, I decided I should tell my father about the prophylactic options I was considering. I knew he wouldn’t be happy. I was pretty sure he would think having a prophylactic mastectomy was a crazy idea, but then again, so did I at first. I didn’t really want to argue with him, but I figured that if I told him what I was considering and let him in on how much research I was doing, then by the time I did have a mastectomy, if that was what I decided to do, he would be comfortable with the idea and would support me.