My mother had a double mastectomy after she found out she was BRCA1 positive. As I said in a previous blog, she had cancer prior to finding out she had the gene. The doctors had to remove every bit of tissue from her, and then begin the reconstruction process that would eventually leave her looking (at least from the outside) completely normal. This was such brutal surgery for her to endure. The reconstruction phase is such a slow process, filled with lots of follow up appointments. It requires a great deal of patience. I remember thinking there was no way I would be strong enough to do that. While doing research for my own surgery options, that feeling never left the back of my mind. I never wanted to experience what I watched my mom go through. I would opt for a different surgery or maybe forego the reconstruction process, but I would have to do something different.
I remember the first time I heard about someone close to my age getting a prophylactic (preventative) double mastectomy. It was in 2012 when a girl by the name of Allyn Rose, who was a contestant in the Miss America pageant, made waves by voluntarily having a double mastectomy to reduce her risk of breast cancer. Allyn’s family history was similar to mine, she lost her mother to breast cancer at the age of 16 , had seen her mother’s fate and was trying to be proactive about her health. The ultimate goal was to never be diagnosed with breast cancer. I remember watching her on TV as reporters asked her all sorts of “important” questions like, “Was she worried how she look in a bathing suit after the surgery?” and “What this might do to her pageant career?”. At the same time they all called her “brave”, which seemed to come off a little condescending. To me this sounded like a horrible situation to have to go through. I remember thinking at the time I would never voluntarily have surgery, even if I was found to be BRCA1 positive.
And then in 2013, another prophylactic double mastectomy patient made headlines. Angelina Jolie decided to announce publicly that she had the BRCA1 mutation and had made the tough decision to undergo the procedure. I remember reading her article and feeling like she had some really great insight into the procedure. I also felt like there were things she made seem too good to be true. Especially after seeing what kind of things my mother had to go through, it seemed like some of the ugly truths about recovery time and reconstruction had been glossed over by her and the media.
Of course the real reason I thought both Allyn Rose and Angelina Jolie were crazy was because they were electing to do the surgery before being diagnosed with cancer. This was a new concept for me to consider. I had only known the surgery in the reactive sense. People I knew removed their breast tissue because something bad had already happened. I was also quite bitter about the entire process, because having a double mastectomy did not save my mother’s life. I had seen a real life version play out right in front of my eyes. Having surgery in no way equates to being cured of cancer. But to play devil’s advocate, how can you get breast cancer in tissue that is no longer there?
Breast cancer is a complicated disease, and making decisions about how to deal with cancer is very complicated. That is why I have been harping on the importance of having a solid foundation when it comes to studying this disease. You really don’t know what you don’t know. You can have huge advantage just by paying attention to your health and staying proactive. In no way do I believe that women who have elected to have surgery after being diagnosed with cancer, have not had success. And I know that electing to have the surgery before being diagnosed does not mean that person will never ever get cancer. It really just depends on your own genetic make-up, family history and surveillance. Sometimes you just have to take all the knowledge and information you have gained, put a plan into action and hope for the very best.
So here I am almost five years removed from losing my mom to cancer. In about a week from now I’m having a prophylactic double mastectomy. I am completely satisfied with my decision, with my doctors and with the type of surgery I have elected to have. So to that bitter person I was five years ago, I would say, never say never.
