“The goal was to put women back in the driver’s seat of their healthcare choices and allow them to advocate for themselves (sometimes even with their own doctors).”
—Allyn Rose, Women's Health Advocate & Founder of The Previvor Foundation
This October marks 10 years that I’ve been part of what’s known as the “Breast Cancer Community.” I once heard it referred to as “the worst club with the best members.” I don’t think I could put it better.
In 2010, I was a college senior at the University of Maryland, College Park. Like most students, I was trying to soak up the final few semesters with friends, mastering procrastination, and asking myself the age-old soon-to-be-grad question: “What’s next?” While avoiding finishing one of my final papers, I received an e-mail on my sorority’s listserv entitled “Breast Cancer Charity Pageant.” I opened it—anything to avoid another 5 pages on legal theory. The e-mail was inviting students who had a connection to breast cancer to enter a new beauty pageant, benefiting a breast cancer non-profit. I was intrigued. Something inside of me said, “Just give it a try.”
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I was far from what you’d consider the beauty queen type. I wore high-top sneakers, leather jackets with studs and was a former member of a punk rock band.”
—Allyn Rose, Women's Health Advocate & Founder of The Previvor Foundation
My mother had lost her second battle with breast cancer just a few years prior and I knew that she would have given anything to see me in a beautiful gown, participating in something like a pageant. But you have to understand, I was far from what you’d consider the “beauty queen” type. I wore high-top sneakers, leather jackets with studs and was a former member of a “punk rock” band. Not exactly Miss USA. But throwing caution to the wind, I filled out the form, submitted my best MySpace profile picture, and pressed send. What happened next changed the trajectory of my life forever. I ended up not only becoming a contestant but winning that pageant (which, looking back, was nothing short of a miracle). Fast-forward three years, and I would have the opportunity to compete in Miss USA and Miss America. For a punk rocker at heart, it still doesn’t feel real.
As a Miss America contestant, I chose to advocate for preventive healthcare as part of my charitable platform. As the daughter, granddaughter, and niece of women who lost their lives to breast cancer, I knew just how important it was that I be proactive in my breast health. At that point, I had already made the decision to preventatively remove my breasts in an effort to avoid breast cancer and hopefully prolong my life. This came after a hard conversation with my father where he had looked me straight in the eye and proclaimed “If you don’t take this seriously, you’re going to end up DEAD DEAD DEAD… just like your mother.” I was only 18 at the time, but the “kid gloves” had come off. My father knew that he needed to be that brusque with me if I was going to take it seriously. It gave me the long term perspective that I needed.
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While I didn’t end up walking away with the Miss America crown, I was given something that, looking back, was even better—a platform to speak to my generation.”
—Allyn Rose, Women's Health Advocate & Founder of The Previvor Foundation
A few months before the Miss America pageant, I received a call from a journalist asking about my decision to undergo surgery. I happily shared my story and looked forward to having a nice newspaper clipping that I could put in my scrapbook. I wasn’t prepared for what came next. I woke up the next morning with 17 missed calls, voicemails, a barrage of unread e-mails. I was now the top trending story on every major U.S. and international media outlet with the headline: “Miss America contestant, 24, to undergo preventative double mastectomy” and my quote “I’m choosing life over beauty.” The story seemed to take the world by storm. This was prior to Angelina Jolie’s revelation and women in the “beauty industry” simply weren’t talking about things like this. Hell, most people didn’t even know that a surgery like this even existed.
Before I knew it, I was speaking at events across the country, I appeared on all the morning talk shows, I was asked to give a TEDx talk and my world didn’t stop spinning for months. While I didn’t end up walking away with the Miss America crown, I was given something that, looking back, was even better—a platform to speak to my generation. I knew that this was not an opportunity afforded to many people, so I put my plans to attend law school on hold and began working as a passionate advocate for preventive healthcare and educating women on their healthcare choices. As the years went by, I felt driven to do something more than simply share my personal experience—I wanted to provide others with a resource to help them in their journey.
Photo: Courtesy of Allyn Rose
At age 26, I underwent a bilateral double mastectomy, becoming a Previvor— removing both of my breasts in an attempt to “previve” breast cancer. Being so public with my surgery and having had a positive cosmetic outcome, I soon started being inundated with messages from women all over the world asking about my surgery: “Are your implants over or under the muscle?” “Did you keep your nipples?” “Do you have fat grafting?” “Do you have any sensation remaining in your breasts?” I quickly realized just how difficult it was to be fully informed on topics like genetic testing (to identify if one carries a breast cancer gene mutation), types of mastectomy, and the accompanying options for reconstruction. Even having earned an honorary Ph.D. in Google, partnered with some of the best doctors in the world, and really having done my due diligence in preparing for surgery, even I didn’t have all of the answers. This didn’t sit well with me. And one day, I said to myself, “I need to stop waiting around for things to be different. Why not just build it myself?” So, with a budget of $0.00, no experience in web design, I set off to create what would become The Previvor Foundation, a 501(c)(3) non-profit digital women’s health platform nicknamed the “Wikipedia of Mastectomy.”
In October 2019, The Previvor went live, becoming a one-stop-shop for women wanting to learn about ALL of their breast health options. The goal was to put women back in the driver’s seat of their healthcare choices and allow them to advocate for themselves (sometimes even with their own doctors). Breast reconstruction had become an “assembly line,” with physicians offering patients one option for breast reconstruction and “out the door you go!” I wanted women to know that there are numerous options for surgery and what’s best for one woman’s body might not be what’s best for yours. And the more informed you are prior to surgery, the more likely you are to be satisfied with the outcome. My best advice: If your doctor says no to the surgery and you think is best for your body, it’s probably time to get a new doctor.
The Previvor continues to grow, providing additional resources, and creating a community of empowered and informed women. To learn more or to donate, please visit www.ThePrevivor.org.
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If your doctor says no to the surgery and you think is best for your body, it’s probably time to get a new doctor.”
—Allyn Rose, Women's Health Advocate & Founder of The Previvor Foundation
About the Author: As a 24-year-old Miss America contestant, Allyn Rose made headlines across the globe with the controversial decision to undergo a preventative double mastectomy after losing her mother, grandmother, and great aunt to breast cancer. Allyn's story inspired celebrities like Angelina Jolie and a new generation of women to take charge of their healthcare choices. Determined to encourage other women to know that their scars are beautiful, Allyn boldly became the first woman with a mastectomy to model for Sports Illustrated Swimsuit. She is the founder of The Previvor, a 501(c)(3) non-profit women's health platform, which serves as a resource for women undergoing mastectomy and the creator of the #SelfExamGram, a social media movement encouraging women to perform a monthly self-breast exam.
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