In a very unexpected way, my BRCA journey gave me the gift of self-confidence.
by Becki Compson
When I learned I was positive for the BRCA2 mutation, the idea of prophylactic breast surgery was not a matter of if, it was a matter of when.
I was 32, had a young daughter at home and another on the way. In addition to the statistical risk my new BRCA diagnosis provided me, my personal risk factors included a family history of breast cancer diagnoses before age 40. It wasn’t something to which I needed to give much thought. While a positive BRCA result was certainly not ideal, I felt I had been given the opportunity to control my future: I was one of the lucky ones; I had a plan. My pregnancy would complete my family, I would nurse my new baby, and I would have the risk-reducing surgery before age 35. Decision made.
Two years later I began seriously planning for surgery with a naïve optimism that I had already made the hard decision. I just needed to get my ducks in a row, and the next step was to land on my reconstruction plan. So, I began meeting with plastic surgeons. Suddenly I was faced with a new reality that my “plan” was not as easy as I wanted to believe. Reconstruction was hard. Reconstruction was involved. Reconstruction could mean multiple surgeries, additional risk and a longer recovery time. Reconstruction sometimes involved cosmetic maintenance. Reconstruction was a commitment. It was a commitment I wasn’t sure I could or even wanted to make. It required a whole host of new decisions that I had no interest in making.
I felt overwhelmed, confused, and unsure. My inability to make a decision about reconstruction made me question everything, including myself. Maybe I couldn’t make a decision because I wasn’t really ready for the mastectomy? Why didn’t I feel the same about reconstruction as I did about the mastectomy? Wasn’t it just part of the normal process? Am I weird for not wanting any of these options? Maybe I should keep screening for a couple of years and think about it some more? Where was the woman, the mother, the working professional that was so confident going into this? I didn’t know it at the time, but somewhere along the way I had started listening to everyone around me and had stopped listening to myself.
I listened to doctors tell me how far reconstruction had come in the last twenty years and that I’d be very pleased with the results. I listened to a therapist tell me that I couldn’t make a decision because I hadn’t come to terms with the reality of my BRCA diagnosis. I listened to friends ask me why I wasn’t excited about a free boob job and tummy tuck. I listened to an acquaintance who had undergone breast augmentation tell me it was no big deal. I listened to plastic surgeons talk about multiple surgeries as if it was something that didn’t need to be seriously considered and questioned. I listened to family tell me I should choose whatever option would give me the most “normal-looking” result.
The culmination of these narratives made me believe something was wrong with me for not wanting this option. I let them dictate my choices and made a decision based on what I thought would be the least-worst option. I thought making a reconstruction plan with my surgeon would help me get behind it and bring relief that the decision was made. In total, I had spent six months trying to convince myself it was the right thing to do.
But that day, in my surgeon’s office, I just felt sick that I was agreeing to something that didn’t feel right. I still wasn’t permitting myself to listen to my own voice.
One evening, in a flood of tears, I found the courage to tell my husband that I still wasn’t onboard with reconstruction. I told him I felt so conflicted because I really believed my reservations about the risks and challenges reconstruction would outweigh the peace of mind I was gaining from removing my breast tissue. And, if that was the case, if I was trading one problem for another, why was I going to put myself through this? I just didn’t like the idea of reconstruction or the process I would need to go through. Then in pure desperation, I blurted out “I wish there was an option to just have the mastectomy with no reconstruction.” He very sweetly looked at me and said, “Ok, so do that.”
In that instant, my narrative changed.
You see, in that moment I had dared to speak my truth. My wants. My wishes. One simple statement of validation from my husband made me realize that I had stopped listening to myself because my inner voice didn’t seem to match what everyone else was telling me. I had allowed myself to believe that I was somehow wrong for feeling the way I did. And in that moment, I realized that I didn’t need anyone to tell me what to do or how to feel because I knew what I wanted out of this process. I just needed the courage to speak it. And so, I dared to articulate what I wanted.
I wanted to reduce my risk of getting breast cancer and get back to my life. I didn’t want the extra surgeries. I didn’t want to mess with another area of my body to recreate breasts. I wanted the worry to go away. I didn’t want to go for a scan every 6 months thinking it was going to be the worst day of my life. I wanted to get back to yoga. To be able to lift my now two-year-old in and out of her crib. To get my kids in and out of their car seats. I didn’t need reconstruction to do those things. What I wanted was a one and done surgery and for this process to be behind me.
And so, I hit the reset button and changed the way I spoke with my medical team. I began asking questions about “going flat” and researching outcomes. I built a team around me that was supportive and onboard with what I wanted, not with what they believed I should want or what their other patients chose to do. And you know what? I felt the relief I was seeking. Sure, there was still anxiety leading up to surgery, I would be lying if I suggested anything else, but I was at peace. I was confident. What had made me so unsettled before wasn’t the plan itself, it was that it wasn’t MY plan. I wasn’t listening to myself.
As I write this it's now been eight weeks since my prophylactic bilateral mastectomy with no reconstruction and I feel great. Life is getting back to normal. And while I am thrilled with my result, I know there is still a lot of learning and acceptance of my new body that will come with time. But most importantly I feel at peace. Peace because I was able to take control of my future. Peace because I know I made the decision that was right for me. In a very unexpected way, my BRCA journey gave me the gift of self-confidence. It taught me to listen to my inner voice and make my own decisions with confidence. And, it taught me to define my own narrative, regardless of what anyone else thinks about it.
Unfortunately, today’s medical system is not yet set up to present “flat” as a wonderful option for women facing a mastectomy. It’s usually seen as a consequence of other factors that make reconstruction not viable. If you are still on your journey, don’t be afraid to ask for what’s right for you. Know that you don’t have to reconstruct if it doesn’t feel right, and that decision won’t make you any less beautiful.
Editor’s Note: To read more stories like this, check out our GENETICS issue .