My Story as A Former Pageant Queen Turned Previvor and Activist
I get asked the question a lot: “What does the word previvor mean?” Even defining it – “someone who has survived a predisposition to cancer” doesn’t really seem to encompass its significance. For a young woman like me, becoming a previvor is as much an affliction as it is a badge of honor.
By the time I turned 16, I had lost my mother, grandmother and great aunt to breast cancer. My mother having faced her first bout (a Stage 3 diagnosis) at the young age of 27. After discovering a concerning lump in her breast, she was repeatedly turned away from physicians with the now defunct dismissal: “You’re too young to have breast cancer.” By the time she was finally given a mammogram, her tumor was the size of a golf ball. At the time, this diagnosis meant that she would have to undergo a radical mastectomy, all the way to the chest wall, followed by several rounds of extensive radiation, all but eliminating any chance for reconstruction. Unmarried and childless, the loss of her breast seemed almost more daunting than the cancer itself.
Growing up, I only ever knew my mother with one breast. That constant image was a subconscious reminder that I too may face the same fate as each woman in my family before me. Even more interesting was that none of the women had tested positive for a known breast cancer gene mutation, which might have explained the propensity towards breast cancer. That somehow made it more frightening – why was this happening? At age 18, just two years after losing my mother to her second diagnosis, my father introduced the idea of undergoing a preventive double mastectomy to eliminate my breast cancer risk. As a rebellious (and late blooming) teenager, I scoffed at his suggestion. “Why would I ever do something like that?” He spared no sympathy and told me, “If you don’t, you’re going to end up like your mother!” That was a turning point in my life. It was in that moment that I realized that I no longer had the luxury of my youth – that based on my family history I had a strong likelihood of developing this disease at some point in my lifetime. I wanted to be alive and there for my own family someday, so I made the decision to undergo surgery in the future.
What seemed like a lifetime later, but what was in reality just a few short years, I found myself competing for the titles of Miss USA and Miss America. Through a combination of dumb luck and divine providence, my charitable platform and decision to undergo a mastectomy became headline news across the globe. I was thrust into the unique position of having a platform to speak directly to my generation. As I made the rounds on morning talk shows, found myself featured in magazines, on panel discussions and even giving a TEDx talk, I realized how profound this moment was for women like me. I knew how fortunate I was to be alive and to be given the opportunity to potentially save my own life through preventive surgery. Following my viral moment, Angelina Jolie made her revelation that she has undergone a mastectomy after discovering she carried a BRCA gene mutation like her own late mother. I knew that I was making the right decision. I assembled a team of top doctors and in March of 2015, at the age of 26, I had both of my breasts removed in an effort to prevent breast cancer.
I haven’t looked back. Each day I remind myself that I need to make use of every breath that my mother no longer has. I’ve made it my mission to encourage other women to take charge of their healthcare, to know their family health history and to be bold in their choices.
In October 2019, I launched The Previvor – a digital women’s health platform aimed at putting women back in the driver’s seat of their healthcare choices. The Previvor is the first of its kind, enabling women at all stages of their journey to access comprehensive information about genetic testing, mastectomy and breast reconstruction options. – Allyn Rose