image1.jpeg

Nafisa Sayani

“It all began with a Hollywood actress hitting the headlines... in my life as a journalist, it was just another news story, but for me personally, it meant much more. The day Angelina Jolie revealed to the world that she carried a faulty gene that significantly increased her risk of breast and ovarian cancer, I was living the same story. Two years before, at the age of 23, I had discovered I carried the same faulty BRCA1 gene.

 

While most cancers aren’t hereditary, a mutation in a BRCA gene can be passed on from one generation to the next, increasing the risk of certain cancers for both men and women. As a reporter, I was trained to be professional, to keep my personal life out of my work, to separate the two. 

 

I know a good story when I see one, and I considered sharing my own several times. But it just seemed too personal. I interviewed people for news stories about the most intimate subjects - I spoke to parents who had lost children, sat in inquests recounting the last moments of peoples’ lives, asked questions that explored deepest thoughts and feelings. Yet when it came to myself, I was terrified of letting my armour down and baring my soul. So I held back, tucked that part of me away and kept my work life strictly professional. My on-air career was taking off, but behind the screen-ready smile, BBC bob and manicured nails, it was a different picture. In the back of my mind, BRCA was the bogeyman that kept me awake at night, but I couldn’t bring myself to confront it just yet. 

 

Then I went to Canada and met a girl who changed my life. She had watched her mother die of ovarian cancer, and the loss was so painful that it was tangible. As a BRCA mutation carrier, she’d had a prophylactic mastectomy to reduce her risk, and urged me to attend a Breast Reconstruction Awareness Day for women considering post-mastectomy breast reconstruction. There I spoke to a woman who had known for years that she was high-risk, but had been diagnosed with breast cancer while on the waiting list for preventive surgery. 

 

I knew what I had to do. I had known it long before Angelina Jolie made her announcement, but this made up my mind. At the age of 30, I was two years away from the same age my great-aunt had received her cancer diagnosis, and my breasts felt like ticking time bombs. 

I researched the subject of BRCA as I would have a developing news story. I sought out the most knowledgable experts to talk to, case studies who had experience, and read through the statistics until I knew them by heart. 

A year ago today, I finally had my prophylactic double mastectomy and reconstruction, reducing my lifetime risk of breast cancer from around 85%, down to 3% - less than the average woman without a mutation.

 

Even in my morphine-induced fogginess, I felt an overwhelming sense of relief. But in the weeks that followed, I couldn’t wash my hair or do my make-up and felt less and less like the version of myself that I recognised. And then, in the midst of my recovery, a job came up at Ovarian Cancer Action. Focusing on raising awareness of hereditary cancer mutations including BRCA, it was something I felt compelled to do. And so it was that just weeks after my surgery, I sat in front of the interview panel and explained why this was a role that was meant for me. I was still tired, uncomfortable and dosed up on painkillers, but it didn’t matter - I wasn’t interviewing for a job, I was telling my story. 

 

To begin with, it was scary - for once, I actually had to turn up to work as myself. I felt vulnerable and exposed - I could no longer hide behind a flawless exterior. But as time went on, I realised that my experience was an asset. Now, my professional life was personal. Every time I've picked up the phone to a woman who was worried about her family history or spoken on the panel at an awareness event, I know I can speak from the heart because I’ve lived it. At times it is hard - I can no longer escape by throwing myself into work. Every day I walk into the office is a constant reminder of my risk. But then I think about the awareness raised by Angelina Jolie speaking out, of the good that can come of sharing our toughest times and the strength we draw from facing adversity together. I think of the incredible support that can be found sometimes in the most unexpected of places, and of the hope we discover from the hardest of lessons. I think of all the incredible women and men I’ve met in the past year who have reminded me of the beauty of life and the value of each moment, no matter your circumstances or your background. BRCA hasn’t defined me, but it is part of who I am - the same person I always was and will continue to be. My life is not a Hollywood movie, it is reality. And life is too short not to be me.”