Remember when Angelina Jolie made headline news for removing her breasts after learning she carried the BRCA gene mutation? Today’s story is from Mollie who lost both her mother and grandmother to breast cancer. When she learned she carried the BRCA gene mutation, she decided to do something about it. Read and share.
You’re one of the only women being featured this month that has not been diagnosed with breast cancer. However, the disease has dramatically affected your life. Tell us why.
My mom tested positive for the BRCA1 gene mutation shortly before her death in 2002. In early 2007 I decided that it was time to find out whether or not she had passed the gene mutation on to me. I found out in February of 2007 that I do carry BRCA1 mutation. My grandmother (my mom’s mom) was diagnosed with breast cancer in her late 20s, so our mutation is considered extremely aggressive. She passed when my mom was 16.
What was your reaction?
It was crushing. I didn’t realize how much I held onto the hope that I would be negative until that hope was gone. That feeling was immediate, but the rest of the process was drawn out. I watched my mother pass away after a 12 year battle and never met my grandmother, I didn’t feel like I had to make a decision about surgery. The statistics are very clear in my family – any woman who underwent mastectomies (preventative or after diagnosis) is still alive, those who did not are not with us anymore. I knew that surgery was in my future.
It was no secret that I wanted 2 kids, so my life mission became to carry out a very specific plan. I also had to worry about making sure that I was financially able to have these children, but also to pay for my upcoming surgeries. I obtained a job with decent health care, married my then boyfriend, and found out that I was pregnant shortly after our wedding. That pregnancy ended in a miscarriage, but the following pregnancy resulted in our first son. Two years and a miscarriage later, our second son arrived. Our relationship was tested with each miscarriage, realizing that time was passing and soon I would need to undergo prophylactic surgeries, whether or not we had 2 children. We both agreed that we never wanted to hear a cancer diagnosis and it was our goal to beat the clock. Luckily, our second son arrived and it was time to start taking care of my health.
Can you explain the prophylactic surgeries you underwent?
I underwent a double mastectomy with immediate DIEP reconstruction in January 2013. I had a revision surgery in May. I am now in the process of scheduling a supracervical hysterectomy and oophorectomy. I still have not decided whether or not to undergo hormone therapy after this surgery. I have an appointment for nipple tattooing mid-October.
Tell us how those surgeries have changed the way you view your body?
I am extremely self conscious about my body, in particular, the scarring. Someone told me to flaunt it, be proud of what I’ve been through, but I have no desire. I would rather hide it and avoid the stares and questions. I’ve gotten nothing but positive feedback about my reconstruction and I don’t feel uncomfortable in my fully clothed body, but I’m definitely still getting used to seeing so many scars.
Any physical challenges?
I have very little feeling in my breasts. Although I can feel certain touches on my stomach, it’s not “normal” and it feels strange. Like if you push on my stomach I can’t feel it, but if you lightly touch my skin I can feel that. These things are constant reminders and also play into my insecurities.
I imagine learning about the gene mutation had to be extremely difficult. What do you think the biggest challenge has been thus far?
After receiving my test results, I began waiting. I waited to get married and refused to sacrifice my ideal wedding for the sake of hurrying. I waited to become pregnant. I waited to be blessed with my second child. I waited to finish nursing so that I could address the necessary surgeries. I waited months for my initial doctor’s appointment. I waited to schedule my mastectomies. I waited to undergo my mastectomies. I waited to schedule my hysterectomy. I continue to wait.
I am not a patient person and this process has been a true test. I can’t even describe how much I am looking forward to the day that I no longer wait. Unfortunately, I continue to find myself in what feels like an endless limbo. I’m anxious to schedule my next surgery and at least have a date.
I wrote in my first blog post “I planned my life through the surgeries. After that, I am a blank canvas.” and I still feel that way. It is going to be amazing to feel free – free from doctors, from surgeries, from planning, from worrying, and just move forward as me. I’m not so deluded to expect that life will be easy, but I do expect a lot of stress eliminated and a much more fulfilling future. I want to watch my boys grow, strengthen my relationships with friends and family, and most of all just take time be present, something that I feel that I couldn’t do in the recent past.
Do you foresee any future roadblocks?
Fortunately, I do not. I refuse to even consider that I may be among the small percent that take all of these preventative measures and still are diagnosed with cancer. If that day does come, I will cope then. I will not allow myself to live in fear, to consider the “what if.” I am confident in my decisions. I chose this path to live a long and hopefully fulfilling life. I don’t want my sons’ memories of me to be consumed of visits to a hospital or illness due to treatments. I want to move forward and live my life.
Mollie has previously appeared on my blog shortly after news broke about Angelia Jolie’s decision to undergo a prophylactic double mastectomy. You can read more about Mollie’s decision to remove her breasts after learning about her BRCA diagnosis here.