Radical? I can see how these surgeries may seem radical to some people. But to me, at 32, they were not radical at all.
My mother was diagnosed with ovarian cancer at 43; I was 12 at the time. She survived the ovarian cancer, but at the age of 51 she was diagnosed with breast cancer, and she died when she was 55.
My first cousin was diagnosed with breast cancer at the age of 43 and then recovered, but later was diagnosed with ovarian cancer and died at the age of 47.
My mother died before genetic testing was as readily available, but my cousin was able to have the genetic testing before she passed away. The results showed that she was positive for the BRCA1 mutation. Essentially, what this means is that with the BRCA1 mutation, one can have up to about an 87% risk of breast cancer, and about a 40-60% risk of ovarian cancer. My family had obviously proven those risks a dangerous reality.
For years I avoided having testing done, instead I chose a surveillance program as my breast surgeon suggested, assuming I may be positive. Then, about 8 months ago I had a breast cancer scare, and while I waited for results, I had the genetic testing done. All I could think was that I didn't want to have to go home and tell my kids I didn't try everything possible to avoid cancer. Turns out, luckily, I did not have breast cancer. But while I was waiting the couple of weeks for the results to come back, I started working with my breast surgeon on moving forward with a prophylactic mastectomy, interviewing plastic surgeons, researching reconstruction methods, and talking to my gynecological oncologist about hysterectomy.
By now, I was ready to broach the subject of surgical interventions. I had always known that if I found out I had a mutation, I would want to have the prophylactic surgeries, and that I would want to complete the surgeries as quickly as I could while still allowing my body to heal. I had researched what it meant to be BRCA positive, and had many discussions with my physicians, genetic counselor, friends and family. I knew that I was as prepared as I could be should the result be positive, and that my support system was intact.
When I received the call that I was BRCA1+, despite all of my matter of fact planning, I was devastated. All I could think about was my children. As shocking as the news was, there was some odd relief in finally knowing, not having to carry the unknown around with me anymore.
At the age of 32, I was the oldest woman in my family with the BRCA mutation still living. 32!!
My children are older, so I made the decision that I was content with having two kids, and that quite frankly, the risk of leaving my children while I'm still young, wasn't worth the benefit of possibly having more children in the future.
On March 13th 2008 I had a hysterectomy, and three weeks later I had a double mastectomy with reconstruction, and since then I have had 2 other reconstructive surgeries, the last being about a month ago. I was very blessed to have a large network of friends and family who were with me every step of the way. As a child, much of my activities stopped with my mothers illness. It was important to me that my children were able to carry on with their lives, and stay busy as much as possible, without feeling pulled away from me. My support system brought us meals EVERY DAY for months, made sure my children got to their activities, they had sleepovers with me when I was sick, or scared, or sad, they held my hand in doctors appointments, made me laugh when I really needed to, and most importantly they kept my world moving when I needed to step back for a while and fight for myself.
These surgeries were obviously not easy...but what they did, was allowed me to fight. I can breathe now, I can slow down, I'm not being chased by our family's cancer anymore.
That, and I have a pretty nice set now. I'm currently working on breaking myself out of the habit of subconsciously publicly groping myself. And quite frankly, I have children to raise, books to read, a world to travel, food to eat, friends to love, men to meet, a very co dependent dog to care for, and adventures awaiting me. Impending cancer doesnt fit well into that schedule.
So...radical? No, not to me. Radical would have been going out without a fight.
Christina-thank you for speaking up. Shine on love!
Kate
By the way: Support networks:
Bright Pink!!! (Love you Linds) I don't' know how I would have made it without my brightpink sisters.
The Wellness Community
FORCE