I also cannot believe that no one has commented on your very brave decision and I am really glad that you had the strength to go through with this. My wife (47) with a family history of ovarian cancer (sister) cervical cancer (mother) and breast cancer (grandmother) has decided to have a total Laproscopic hysterectomy with bilateral salpingo oopherectomy as a preventative measure. Although she does not have the BRCA1/2 gene she feels that peace of mind is more important than waiting for the silent killer ( her sister died within three months of diagnosis!!. Never an easy decision as there is no definitive test but she wants to be around for a long time yet. I fully support her in whatever decision she has made as I too want to grow old with her by my side. Just a view from a concerned husband. Best wishes for your continued good health.
What would you do if you had an 84% chance of winning a million dollars? Would you place that bet? It is a question I often ask before I share my story—it helps people understand where I was at when choosing my path.
My mom’s side of the family tree is riddled with cancer—breast, ovarian, lung, pancreatic, and colon. Because of this history, one of my aunts was genetically tested in 2000. Through her testing, we learned that our family carries the BRCA2 gene mutation. In 2001, my mother tested positive for the mutation, too—which meant I had a 50/50 chance of inheriting it.
Everyone has the BRCA2 gene, which is considered a tumor suppressor gene. But mutation of this gene, which occurs in 2.1% of Caucasian women and 2.6% of African American women, has been linked to the development of hereditary cancer. It means up to an 84% chance of developing breast cancer and up to a 40-50% chance for ovarian cancer.
At the time my mother got tested, I was in my mid-20s and dealing with secondary infertility. I had given birth to our son, but had been told shortly after that I shouldn’t expect to become pregnant again because of a hormone disorder. The last thing I wanted to do was acknowledge the big pink elephant in the room: my family history of cancer, and the fear I had that someday this history would be my reality. And so, I set it in a box in the corner of my mind.
Several years went by, and I was blessed with a second miracle baby. But the realization that my 30th birthday was approaching woke me up—I really needed to be genetically tested. Even though I had avoided the topic, I knew the youngest age cancer has presented itself in a family is important, and a tumor was discovered in my cousin at age 30.
I chose not to tell anyone in my family that I was going to be tested—I just needed time to digest it in my own mind. I met with the genetic counselor, who explained what would happen: I would have my blood drawn and they would send it to a lab called Myriad. I should have the results in 4-6 weeks.
It seemed ominous when my results returned after only three weeks. I remember crying when she told me it was positive. It felt as if I was crying for the life I knew I just shut the door on. I would no longer have the luxury of ignoring my family “curse”—I would no longer be able to pretend I wasn’t terrified of the hold cancer has had on my family. I cried because I knew the road ahead was not going to be easy. I cried because I was unsure of how I would find the strength to deal with it and who I would be when it was over.
But the moment my tears stopped, I went into action mode. I already knew the choice I wanted to make if my results came back positive. I wanted to reduce my risk of cancer any way I could. I had a beautiful family and a busy life—and I wanted to push cancer as far away as I possibly could. I had heard of women who had gone through mastectomies even though they never had breast cancer. And for me, this was the answer—remove my breast tissue so that the risk of getting cancer was minimized as much as possible.
Ironically, a choice I made to potentially save my life and ensure I could be healthy for my family caused a lot of anger and turmoil in those around me. Instead of trying to come to grips with my own fear of this major surgery, I was trying to explain my choices to those who thought I was being too drastic. I got to the place where I had to shut myself off from those around me so I could focus on making it through surgery.
In January of 2007, I had the procedure: a preventative double mastectomy with immediate tissue expander placement. This means they cut out all the breast tissue they could and put two inflatable balloon-type devices underneath my chest wall muscles. Over a period of several months, I would go into my plastic surgeon’s office to have the expanders filled. Eventually, they would be slightly larger than the implants they would then be swapped out with.
Then, in 2011, I chose to have a preventative oophorectomy and hysterectomy—the removal of my uterus, cervix, both ovaries, and Fallopian tubes. Because of these surgeries, it is estimated my risk of breast and ovarian cancer is now just slightly above the risk of the general population.
I will never be okay with the fact that I had to cut off my body parts in order to have a “normal” risk of cancer. I will, however, always be incredibly grateful that I knew about my gene mutation and that I had the ability to make choices that have increased my chances of never having to hear the words, “You have cancer.”
This past January, I celebrated my five-year “boob-iversary”—or five years since my mastectomy. I wrote this on that day:
Five years ago, the most difficult decision I ever made became my reality. I cry because it was traumatic: the actual surgery, the reconstruction, and the direct ramifications of not having my own breasts. Cutting off a piece of my body has been incredibly difficult on many levels. Five years of facing the fact there are people in the world who say they are your friends but aren’t really. Five years of meeting some of the most kick-ass women and then watching them leave the world. I cry because I will never know another day where all of these things are not in my reality.
Five years. I cry because I am so incredibly overwhelmed by the beauty in all of this, in spite of the trauma. Five years of realizing what life is and isn’t about, five years of being able to explore who I am and what defines me. Five years of meeting some of the most kick-ass women, five years of knowing there are people who “get” it. Five years of feeling unconditional love, support, and acceptance, five years of finally being on a path of self-acceptance. I am okay, I survived.”