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I will never forget the day my parents sat me (age 12) and my little sister (age 9) outside the oncologist’s office at a picnic table and told us that my mom had breast cancer. At the tender age of 12, that was the worst day of my life. Later that evening, writing in my pink journal with a cartoon Dalmatian on the front, I documented the sadness and worry for my mother that overwhelmed me. This was the first time I understood what cancer was and how it could affect me and my family.
My name is Erin and I am now 28 years old. After my mom’s first bout with breast cancer, a lumpectomy and radiation at age 41, she was considered cancer free. Our family history was full of the same disease. My maternal great grandma and grandma both died from the same disease. At the time of my mom diagnosis in 1998, there was little knowledge, if any, on a BRCA genetic mutation. We went on with our lives grateful she was able to beat the cancer.
In 2010, my mom’s friend came to her saying she had been diagnosed with the BRCA2 gene mutation. Considering our family history with breast cancer my mom decided she should get tested to see if she carried the gene as well. After getting tested, she received the results over phone from our geneticist that she was BRCA1 positive. My parents, my sister and I went to meet with the geneticist to find out more about the gene, risk factors and options. My mom decided to get a hysterectomy shortly after the meeting. The decision of the double mastectomy weighed heavy in her thoughts and she decided to put off that surgery until she was ready.
One year later, my mom found another lump, in the opposite breast as her first breast cancer. We were all devastated. She then decided this was the time to get the double mastectomy. She was very lucky to have amazing doctors at Mayo Clinic that were able to perform a double mastectomy with immediate reconstruction in August 2011. Chemotherapy followed her surgery and as of January 2012 she was cancer free. Thank you God!
My mom was cancer FREE! Hallelujah! Now my sister and I decided to test our 50/50 odds with the BRCA1 blood test in March 2012. On April 4, 2012 I got the phone call that changed my life forever. It was our geneticist and at the first word of “unfortunately” I knew then that I was positive for the BRCA1 mutation and my heart sank. I didn’t even get off the phone before I broke down. I knew then and there that I didn’t want to go through what I saw my mother go through twice. I immediately made an appointment to meet about my options.
I met with the same doctors my mother met with one year before and scheduled my bilateral prophylactic mastectomy with immediate reconstruction for Sept. 24, 2012. The time waiting for my surgery was agonizing. But, it was finally here. I was so ready! Waking up from my surgery I felt such a relief. It was finally over. There were definitely difficulties that I didn’t anticipate, like the drains and doing everyday normal activities. The drains were the worst part!
It has now been 9 months since my surgery and I wouldn’t change a thing about my decision. My fear and inspiration was my mother’s cancer. People all have their own opinions about this procedure, but I think that unless you have been diagnosed with a BRCA mutation you will never know what it’s truly like to make this decision. My risk has gone from over 80% chance of getting breast cancer to less than 5%. I will get a hysterectomy when I am done having children to reduce my risk for ovarian cancer. I am extremely thankful for my wonderful family and amazing husband that supported me completely through this difficult decision and tough surgery.
I want to share my story, not for sympathy or attention, but to get the word out about the BRCA gene and help women who may be contemplating the surgery. I am proud to be among some strong and courageous women including Christina Applegate, Angelina Jolie and most importantly, my mom.
The hardest part of my journey was getting used to the feeling without natural breasts. Every time I would lift something, I would be reminded about my surgery. I had immediate reconstruction with my implants under my chest muscles, so when lifting my muscles would flex around the implant. It was a very strange feeling. With the constant reminders through out the day I thought I would never feel normal again. I saw a counselor and have gotten used to the feeling. I am feeling better everyday.
If I could do it over again I wouldn't change a thing. I am very lucky not have had serious complications. I had wonderful doctors and amazing support. I honestly feel like a weight has been lifted.
I just want to help get the word out about this gene mutation and help women going through their testing and decisions.