Ten years ago, at the age of 25, I got a voicemail that would change my life forever. It was from my Aunt, who sadly I never had the chance to meet. In her five-minute voicemail, she told me that she was trying to get in contact with my sister and me to let us know we should get tested for the BRCA1 gene. She had stage 4 ovarian cancer and was a carrier of the gene.
This was a few years before Angelina Jolie went public with her decision to get a prophylactic double breast mastectomy due to the gene. BRCA was fairly unheard of by the general public, and I had no idea what it was. So, I did what anyone would do in my situation… I started Googling and soon saw what my fate could have in store for me.
Coming to Terms With the Possibility of Cancer
I had a 50% chance of having this genetic mutation. If I tested positive, then I would have an 85% chance of developing breast cancer and over 50% chance of developing a second breast cancer. It also means I would have a 40% chance of developing ovarian cancer. The risks also start at a much younger age than the general population would normally have to worry about these cancers. Annual mammograms and breast MRIs are to start at the age of 25 and ultrasounds of the ovaries at the age of 30. It is recommended to have the ovaries removed by age 35.
My sister and I were both stunned by this information. We both decided to get tested and thought it was better to know and be proactive than not to know. A few months later we got our results back. I tested positive. My sister tested negative.
A Preventative Measure
I started routinely getting mammograms and breast MRIs. A few years later, one of my MRIs came back inconclusive and that scared both me and my then-fiancé (now husband). At the recommendation of my doctor, we made the decision to move forward with a prophylactic double breast mastectomy. So, at just 30 years old, and seven months before my wedding day, I went into the biggest surgery of my life to remove both of my breasts.
It was a long and painful journey (both physically and mentally). I had to have two surgeries about three months apart. The first surgery consisted of the complete amputation of my breasts, followed by inserting expanders under my skin so my breasts could then be slowly “filled” over the next 12 weeks before an exchange surgery was performed. During this next surgery, the expanders would be removed and implants put in. The pain was unreal following the first surgery. My mom and fiancé helped me to do everything because I couldn’t do anything involving my arms. Things like shaving my armpits and putting on my own shirt were now insurmountable tasks. I had to sleep sitting upright for months because it hurt too much to lie down. When I finally did get the clearance to drive again (about four weeks after the first surgery), basic things like pushing a shopping cart around the grocery store were painful. On top of all of this, every week I would go get fills into my expanders, which were slowly expanding my skin back to the breast size I had been previously. These fills would put me in bed for the next 24 hours and back on muscle relaxers and pain killers.
The mental side took a toll on me, too. I felt like I had lost a part of my identity. One of the first things we develop as young girls is our breasts. Mine had been a part of me for so long, and now they were gone. I would never have any feeling in them again (and still to this day I have zero feeling). I played the “why me” card over and over in my head. Although I had a lot of support from family and friends, I still felt disconnected from everyone and believed no one really understood what I was feeling and going through. I went in and out of bouts of depression for the next 12 months.
It took me about a year to finally feel like a somewhat normal person again. Or what I like to think of now as my “new normal.” The girl I was before the mastectomy was a different person than I am now. I no longer take things for granted. I understand what it feels like to lose something in your body that can never be given back. I also learned that your breasts are just that, breasts. They don’t define who I am.
Making the Right Decision
Five years later, I now have two beautiful daughters, and I’m so happy that the 30-year-old me made the decisions I did. At the time, I thought I was making the decision to have the mastectomy for me. But I now know I made the decision for my girls. No, neither one of them was ever able to breastfeed. That was taken away from them (and me) when I made this decision. But what I’ve given them is the chance to have their mother here to raise them into strong women. They can get their food source from anywhere. But no one can replace their mother. The scars on my breasts that I see in the mirror are a daily reminder of that decision I made five years ago. A decision that I can confidently say, with all my heart, was the right one.
I am now moving forward into the next big decision I have to make by being handed this set of unfortunate genes. My doctors have recommended I have a hysterectomy at the age of 35. BRCA1 not only puts you at high risk for ovarian cancer at a young age, but new research shows a risk for a very aggressive form of uterine cancer. After careful consideration, much research, and many doctor appointments, my husband and I have decided to move forward with this surgery next month. Sadly, it will put me into full-blown surgical menopause, and we will officially be done having children. Both things carry a heavy weight on my mind and heart as I prepare for this surgery. I know physically this surgery is an easier recovery than the mastectomy, but mentally it will be harder and the long-term effects of surgical induced menopause at a young age have other risks that come along with it.
Every time I doubt myself and think about postponing the surgery, I look at my two beautiful little girls and I know that I want to be here for them. I have never valued my life as much as I value it now since I became a mother. I have never had such a desire to live for as long as I can until I became a mother. And now, I will be thinking about my daughters as I move forward with a surgery that I am dreading from the deepest part of me, the one I know I must go through, for my daughters.
About the Author
Amanda Creech, a Pennsylvania native, has lived in Jacksonville for 12 years. She met her husband, Alex, while living in the First Coast and they have two daughters, Parker (3 years) and Lucy (6 months). Amanda is a Realtor with Berkshire Hathaway HomeServices Florida Network Realty, and has created her own real estate brand, “Closing Deals in Heels.” When she’s not spending time with her family or selling houses, she loves teaching spin classes, working out, camping in her family’s travel trailer (follow along at @acluelesscamper), playing tennis, and exploring all that Jacksonville has to offer. You can #followtheheels and her adventures of both motherhood and real estate @followtheheels1. To learn more about her journey with BRCA1 visit her CaringBridge website.