How A BRCA2 Mutation Changed My Life

I became a Previvor on January 24th, 2020 when I underwent a prophylactic double mastectomy. I made the decision to have this surgery in order to significantly reduce my chance of getting breast cancer. My Previvor journey started in 2014 when my life as I knew it changed forever. Just two months after my wedding my Mother was diagnosed with ovarian cancer at only 53 years old. My life was turned upside down and shattered. My Mom was my best friend and we were extremely close so I was devastated when I received the news. She begun her fight with ovarian cancer by having surgery to remove the tumor which was wrapped around one of her ovaries and the ovaries themselves. After she healed from the surgery she then started chemotherapy to make sure they got rid of any traces left of the cancer. It was the hardest things I’ve ever gone through. Seeing her in the hospital recovering from a major surgery with tubes, i.vs and stitches, to then be sitting next to her in the infusion center where she would sit for sometimes 8 hours getting injected with chemo. It was devastating and I felt so helpless. Shortly after my Mom’s battle begun her doctors revealed that the cause of her ovarian cancer likely was due to a BRCA gene mutation. At the time nobody in our family had a clue what this meant. The doctors explained to us that one of my Mom’s genes was mutated and that mutation increases the risk of her to get ovarian or breast cancer. They told us that I could also have this gene if I was passed it on to me by my Mom. My Mom’s doctors urged that I get genetic testing to find out if I have the gene or not so I can be properly monitored. I went ahead with the genetic tests and was told I was positive for the BRCA2 Gene mutation in 2015 at the age of 28. I still had little idea what this actually meant and hadn’t fully grasped the importance of knowing this information.

My Mom and Dad urged me to get all the recommended semi annual checkups, tests and procedures. At that time I brushed it off and kept thinking “I’m not sick, nothing is wrong with me yet, I’m still young, why do I need to worry?” But my Mom persisted so her doctors started scheduling routine mammograms, breast MRI’s, ultrasounds and CA125 blood work to try to detect any potential threat in my ovaries or my breasts. My doctors suggested that with my BRCA2 diagnosis I should have my breasts, ovaries and fallopian tubes removed eventually after I was finished having children so I could significantly reduce the possibility of getting cancer. For four years while my Mom continued to battle, I did what the doctors suggested and got routine mammograms, breast MRI’s, ultrasounds and CA125 blood tests. The ultrasounds aren’t fun unless you’re having a baby, the mammograms hurt, and the breast MRI’s for me are the worst! I also live over three hours away from the hospital where I was being seen which meant lots of long trips back and forth for all these screenings. The anxiety of getting the results back from all these tests and procedures was horrible. Every time I had a mammogram they called me back in because they “saw something they wanted to get additional images of.” This literally made my my mind go to all the worst places of what it could be and I dreaded the thought of having to tell my Dad they found something. Fortunately the second round of images always came back negative. After keeping up with these checkups and tests for four years, I knew I didn’t want to have to go through this for the rest of my life. After watching the pain and suffering my Mom went through with years of chemotherapy, surgeries and hospital stays solidified my decision to have the preventative surgeries done. In my mind it’s not an “if” I get diagnosed with cancer, it’s a “when”.

My Mother supported and urged me to get the surgeries done and was thankful the doctors at U.C.S.F were able to discover this information so that it could benefit my health in the future. She was so thankful we found out about the BRCA gene mutation early enough for me to have time to do something about it because she didn’t have that chance.  My Mom had a hysterectomy in 2004 and the doctor decided to leave her ovaries in because she was still fairly young at the time. Ten years later she was diagnosed with ovarian cancer. If she would have been tested in 2004 for the BRCA gene mutation and tested positive, they most certainly would have taken her ovaries. My Mother passed away on November 30th, 2018, and shortly after my husband and I decided that it would be best for me to get the preventative surgeries done as soon as possible. We didn’t want to live the rest of our lives with this fear and constant anxiety. Since we had come to the conclusion that we didn’t want to have children, we figured I didn’t need my breasts or ovaries anyway. In early 2019 I met with my surgeons and put the plan into motion for my total skin sparing bilateral mastectomy with reconstruction as well as a bilateral salpingo-oophorectomy.

In the summer of 2019 my doctors starting working on coordinating a surgery date that worked with both my breast surgeon and my plastic surgeon’s schedules. When they called me to say they had picked a date and that my bilateral mastectomy surgery would be scheduled for January 24th 2020, I was terrified. I’d never had a surgery before or even broken a bone. I was nervous to say the least, as I had no idea what to expect, or what exactly I had signed up for. They told me I would first have the double mastectomy as well as having expanders placed in my empty breasts to stretch my skin out to prepare them for the implants. A couple months later I would then come back for a second surgery to remove the expanders, replace them with silicone implants, do fat grafting from my stomach to fill in the gaps and the bilateral salpingo-oophorectomy. I didn’t like the idea of having 2 separate surgeries but I trusted that my doctors knew what was best for me. On January 24th, 2020 I became a Previvor after undergoing a prophylactic bilateral mastectomy.

I am a survivor of my predisposition to breast cancer. I’m patiently waiting for my next surgeries so that I can eliminate the huge risk of ovarian cancer that I’m carrying and get myself some more comfortable and nicer looking boobs. I’m looking forward to completing my Previvor journey. I’m so proud of myself for choosing to take action and not letting cancer dictate my life! Sometimes I still can’t believe I got the courage up to go through with it. I am so happy with my decision and I look forward to a long wonderful life! I know my Mom would be so proud of me and I’m sure she’s cheering me on along on this journey from up above.

By Jennah Terry