Why I chose to document my preventive double mastectomy on social media
— -- "Good Morning America" booker and segment producer Paige More shares her personal experience of under going a double mastectomy in her early 20s after she tested positive for a BRCA1 genetic mutation, which greatly increases your risk of developing breast cancer, according to the National Cancer Foundation.
I have always been fearless. I grew up snowboarding, surfing, and cliff diving in southern California. New adventures excite me and nothing stresses me out. I have always believed that no matter what happens in my life, I can handle it.
That all changed when I was 22 years old and tested positive for the BRCA1 genetic mutation. I had just started working as a booker for "Good Morning America," when my mom urged me to take the test. I didn't think much of it as I was busy trying to prove myself at my new dream job. I figured if it would make my mom happy, then I would take the test. I found out a few weeks later that I had tested positive when my doctor called me with my mom on the line. They both told me they were sorry. I still didn't really understand.
It wasn't until a few months later when my mom came to visit me in the city that the gravity of the mutation set in. It is so important to make sure you are ready for the results before you get tested. We didn't understand how much this was going to impact my life. It is so important to be prepared for the results. I was told that I essentially had two options. I could begin intensive surveillance programs, which meant endless visits to the doctor's office for mammograms, MRIs and blood work. That felt like waiting around to get cancer. My other option was to have a preventative double mastectomy. I left my oncologist's office feeling overwhelmed and scared of my future for the first time in my life.
I spent the next few months talking with my close friends and family. Everyone was incredibly supportive. But no one told me what to do. I really wanted some guidance either way. Should I have the surgery or should I wait until I was older? What if cancer struck while I was waiting? What was I waiting for?
I was never a worrier or an anxious person and I worried about getting cancer every single day. Every time I tried on a new top, took a shower, or looked in the mirror I thought, "I am going to get breast cancer." It was so overwhelming I realized I couldn't live in constant fear anymore.
Fortunately, I was in a great place in my life and I felt like I was ready to have a preventative double mastectomy. My friends, family, and boyfriend were incredibly supportive. I had a stable and steady job. I was healthy and fit. I knew I didn't want to worry and I knew that I would most likely have to do this someday anyway. I was ready now. I wanted to do everything in my power to be a "Previvor," not a survivor.
A previvor is someone who is a survivor of a predisposition to cancer but who hasn't had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor.
In October, we set my surgery date for January 3. I had 90 days to really prepare. I asked my doctors if I should do anything to better prep myself for surgery. They said no. I didn't listen. I joined the gym across from my office and started working out regularly. I ate as healthfully as I could. I made sure I was in the best shape of my life for January 3.
Walking into surgery was one of the strangest experiences in my life. I wanted to turn and run away, but I knew I had to face this head on, like I do with everything else in my life. After a few hours my doctors came out to tell my parents that the surgery had gone incredibly well, in part because my muscles were so strong and I was so healthy. I am so thankful I chose to be proactive and make sure my body was as strong as possible before my surgery. It gave me something other than the surgery to focus on and gave me a sense of power that I had control back over my body. Having a strong core and legs helped me so much during my recovery.
I never intended to share my story. Before my surgery, I looked up double mastectomies online and only saw horror stories and worst-case scenarios. I read how women no longer felt feminine or struggled with their body image after having their breasts removed. I was terrified of feeling the same way. I felt like I had no one to talk to. I felt completely alone. After my surgery I flew home to California to recover and to be close by my family.
While I was home, my little sister who is 13 and loves Instagram, wanted to take some photos of me. I didn't really want to because I expected to be disappointed by what I looked like. But my little sister hasn't been tested for the genetic mutation yet and I wanted her to see that I was still the same big sister and that my surgery hadn't changed me. I also didn't want her to be scared about getting tested for the genetic mutation in the future.
When she showed me the photos she took I couldn't believe how much I loved them and how I looked. I couldn't believe how beautiful I felt. I actually felt sexier than I have ever felt in my life because I knew I took control of my body and potentially saved my own life. That made me feel so empowered and strong. My scars reminded me of this decision and made me feel beautiful. So we continued taking photos and I began posting them to my personal social media accounts.
The response was incredible. People were so supportive. Women from all over the world were reaching out to me, thanking me for sharing and being so open. I felt like I couldn't stop. I wanted people to know that you can have a double mastectomy and it doesn't have to ruin your life. Not only was I happy, I was no longer worrying about the risk of getting breast cancer.
As I continued to post, I started connecting with more and more women. I quickly realized I needed a separate space to post about my experience. I created an Instagram, @paige_previvor, so women going through similar situations would be able to reach me.
Through sharing my story on Instagram I quickly realized that there are a ton of other women who feel similarly to me. I felt compelled to do everything in my power to prevent other young women like me from feeling alone. Through Instagram I have formed a community of young women who have been affected by breast cancer in some capacity.
Rather than having to sit in a stuffy support group meeting, I have started setting up events around the city where we can get together in a comfortable and fun environment -- I call them my breast friends! I hope to give them a platform to share their stories and find a way to help women all over the world connect with each other through Our Move Movement.
