One year ago today I followed through with a very big decision. It’s weird because even though it was a huge huge decision, at the same time it was very simple. I had a prophylactic double mastectomy. In case you don’t know, that is an elective operation to remove the breasts so that the risk of breast cancer is reduced. My mother was diagnosed with breast cancer when I was 10. She was only 34 years old. She underwent several surgeries including a double mastectomy and reconstruction. After all her treatments she was declared cancer free. 14 years later, she had a recurrence in her lung. It spread from there to her bones and her liver. That cancer stole her from us 3 years ago. She was much too young and it has been tragically heartbreaking for my family and I.
My beautiful mom, Jamie with my daughter Ava.
Let’s back up to 2001. My mother underwent genetic testing. There are some known gene mutations that cause an increased risk of breast and ovarian cancer, called BRCA. She was found to carry a mutation in that gene. That means, there is a 50% chance she also passed it on to her children (me and my two younger brothers). If you could find out whether or not you will get a life threatening disease in the future, would you? I have always found that to be a really interesting question. I decided yes. My vanity and comfort was 100% not worth my life. What would you decide and why? I met with the Huntsman Cancer institute for genetic counseling, which is required before they will do the gene testing. I still cannot comprehend this, but they did not recommend gene testing for me. They said the BRCA variant found in our family to be of “unknown significance”. Basically, it was too new and they didn’t have enough information about it yet. I could be off, but I counted 15 women on my mother’s side of the family that have been diagnosed with breast cancer and many of them lost their lives to it. That feels very significant to me and my family. After this, I met with another doctor that does this genetic testing and she also recommend that I didn’t do it. I was so confused and angry. (Soapbox) You know what is right for you and your loved ones, so even if doctors disagree with you, please advocate for yourself and your loved ones! It’s so important! Two years after I met with the Huntsman Cancer Institute, they finally agreed to do the genetic testing for me. It was very simple. I was expecting a blood draw, but all I had to do was swish with mouthwash and spit in a cup. I got my results back about a week later. They were positive, meaning I also carried this gene mutation. What does this mean? Women in the general population have a 12% lifetime risk to develop breast cancer. That risk naturally increases with age. With a BRCA mutation, they estimate the risk to be anywhere from 50-85% of developing breast cancer at a younger than average age. They estimated my risk to be even higher at 90% or more.
Ever since I got that positive result, I knew I would get a mastectomy. Doctors generally recommend doing it at least a couple years before the earliest diagnosis in your family, which was 34 for my mom. I was 24 at the time, so I knew it would be in my near future. I kind of thought, “Well I guess I will have kids a little faster than originally planned and then I will just get it done after that.” I had my first child in 2015. My mom was beyond happy! The most excited grandma I have witnessed. Someone had gifted her a wish box and inside she wrote, “To meet my grandchildren.” I’m beyond grateful she was able to meet her first, and so heartbroken she didn’t get to meet her second. When my second child was born, I was 27. I realized motherhood is freaking hard and I wouldn’t be ready to keep adding more children to my family so quickly. My husband and I made the decision, it would be best to just get the surgery over with now and we can have another child when we’re ready. I didn’t want to risk pushing it off any longer.
The surgery was scheduled for May 10, 2018. I was so nervous leading up to it. I saw first hand my mom and her twin sister’s experience with their reconstruction surgeries and it was not a positive experience for them. Even though reconstruction techniques have gotten better since then, I was terrified. I just assumed I would just have a horrible experience and less than desirable results. I even scheduled a portrait session of just me because I was afraid I wouldn’t be me or look like me anymore. (If you know me, this is a big deal because I hate having my photo taken haha). Overall, the procedures weren’t as bad as I thought it would be. I had amazing doctors who I am so grateful for. I highly recommend them, so if you or anyone you know needs a referral just message me. It was a major surgery, I was in a lot of pain, recovery was sooo long. I had two drains, one on each side by my ribs. I had them for two weeks and they were the worst. Three months after the first surgery, I had reconstruction surgery. They can use your own tissue from your stomach or back, but I chose to have implants. While I was recovering from that surgery, I found out I have a herniated disk in my back. It was made worse from me having to sit and lay down so much after surgery. There will be a third surgery eventually, but because of the back issues and me being so tired of recovering from surgery I have put it off for now. A very special thank you to my husband, family and friends that took care of me, watched my kids and cooked us meals. I’m so grateful for everyone’s kindness. I’m very happy with my decision. I am afraid of what it will be like when I have another baby that I won’t be able to breastfeed. I really enjoyed that experience with my first two babies, so I know that will be hard for me.
Photo Credit: the talented Melese Miller
I am normally a very private person. Leading up to my mastectomy, I told very few people and haven’t talked about it much since. I have gone back and forth on whether or not to share my story. I decided to because I’m so grateful to those before me that shared their stories. It was so helpful as I did my research leading up to surgery and helped me know what to expect. (However, I did regret watching a few videos that showed the actual procedure. That was terrifying and probably not my best move haha.) I hope this is helpful to someone out there and I’m always here to answer questions if you or someone you know is facing the same thing. Bottom line is, you can do it! You will still be the same person afterwards, even if you have a few scars.
