Charlie Morgan: Tits up! Finding the positive in a BRCA mutation

When Charlie discovered she carried a BRCA2 mutation at age 20, she wanted to find and connect with other younger women who understood what she was going though and the options that lay ahead. Charlie shares her story and the experiences that led her to create the supportive community The BRCA Project.

She had made jokes about it, but when my friend arrived at my door with a handmade piñata shaped as two giant breasts, I knew the day was going to surpass all expectations. Other friends arrived with nippled cupcakes, good luck cards covered with illustrations of breasts in all shapes and sizes, and, most movingly, a ‘Little Book of Love and Support’ filled with wonderful messages from all the important people in my life. I’d been planning my ‘Boobie Shower’ for weeks, and it came with plenty of laughter and tears in equal measure. One week later, at London’s University College Hospital, I was to undergo a preventative double mastectomy.

In February 2018, at age 20, I was diagnosed with a BRCA2 genetic mutation. 

The news was impossible to take in. My whole life stretched out in front of me in intervals of statistical risk. It was completely isolating. For the first time I had to ask myself serious questions about my relationships, my future family, and my relationship with my body.

Despite all this, I remember feeling especially fortunate to have found out about the mutation. My parents, as Ashkenazi Jews, had been invited to participate in a national study on genetic cancers even without a family history of breast. My dad was shocked to learn that he was a carrier and his children would each have a 50% chance of carrying the same mutation. As we got tested, we learned in turn that my eldest brother and I were carriers too. I was absolutely devastated when I found out. I cried publicly, and for a long time. And then I stopped crying, hugged my friends, and looked at my options.

I wanted to find women who were going through the same thing. Online, I found memoirs that described experiences of living with BRCA mutations as isolating and distressing. I found forums of middle-aged breast cancer survivors, and photographs of mastectomy reconstructions on bodies that looked nothing like my own. These women were unbelievably strong and courageous for sharing their stories, having been through so much – but I had not been given a cancer diagnosis. I had an increased risk, and it was a risk I wanted to manage. 

In the summer of 2018, I made my first appointment with the breast surgeon. And, after what felt like a very long year of physical and mental health checks, we scheduled my surgery for the following July. 

In the weeks before surgery I had tried to stay positive by planning my ‘Boobie Shower’ and a holiday with my friends. 

It didn’t surprise them, or my family, that the weeks after surgery were just as upbeat. Yes, the physical recovery was exhausting, and the emotional recovery is ongoing, but they’re nothing compared to a lifetime in fear of breast cancer. 

BRCA groups often use the term ‘previvor’ to describe their members. I’m now a proud previvor. My genetic battle isn’t yet won – there are follow-up surgeries to undergo, more risks to worry about, and questions about passing the gene onto my future children. But I feel almightily lucky to have been able to undergo the surgery and be out on the other side smiling – and without a bra! 

When Covid-19 brought lockdown, I took a step back. 

I wanted to see how I could use my experience to create positive change in the BRCA community in the UK and Ireland, to unify carriers and raise awareness. So, I launched The BRCA Project on Instagram. The page provides a much-needed opportunity for BRCA carriers – and their families and friends – to come together to talk about their uniquely BRCA-oriented experiences, and to find stories of those going through the same things. I’ve already met so many fantastic people through The BRCA Project, including a handful of under-25s who felt that their age excluded them from existing support networks. As each new BRCA carrier receives a diagnosis, I hope that they won’t have to feel the same isolation I experienced. Through The BRCA Project, I hope that they will be able to find their community.

You can find The BRCA Project on Instagram at @thebrcaproject.