Unlike most young people, cancer has always been a part of Allyn Rose’s vocabulary. Rose—the beauty pageant contestant turned motivational speaker, social media influencer and nonprofit founder—witnessed many family members, including her own mother, battle the disease. That is why, when Rose made the decision to undergo a preventative double mastectomy in her 20s, she was not afraid to share her story with the country and, ultimately, the world. “I was very fortunate that I had a mom that was really very resilient and strong and said cancer was a part of my life, but it didn’t define my existence,” says Rose.
From an early age, Rose says cancer impacted her family. Although Rose did not test positive for the now-commonly known BRCA gene mutation, she did learn that she is a carrier of a different gene mutation.
“It’s an X-linked chromosomal disease, so only males are affected, but females are carriers. And I had lost three uncles to this disease,” she recalls in a conversation over Zoom from Frankfurt, Germany. “So my mother was very proactive in talking to me about how my genes could impact my future fertility or impact life. At the time, there were some studies saying […] the gene that I carry may have a link to women being diagnosed with breast cancer. So there was always this kind of idea [that] we’ve got faulty genes somewhere.”
Rose’s mother was diagnosed with stage III breast cancer at age 27. She underwent a unilateral mastectomy and wore a prosthesis. “I remember she said, ‘This is a bump in the road and I’m over it and on to the next thing,’” Rose recalls. The next things in her mother’s life included having children and starting her own company.
Unfortunately, her mother also neglected other areas of her life, including yearly screenings. “Her brother had been diagnosed with small cell lung cancer and she said, ‘OK, this is my wake up call. I’m going to get that preventative mastectomy,’” Rose says. But while undergoing preparation for the mastectomy, the doctors discovered her breast cancer had returned. Rose was only 12 years old. “To really be moving into being a young adult, developing my womanhood, with a mom battling breast cancer was a different experience than most people,” Rose says.
Rose’s mother eventually lost her battle to breast cancer. “I knew that I was going to have to do something if I wanted to preserve my life,” Rose says. Her father was very adamant about being proactive. At age 18, her father brought up the idea of having a preventative mastectomy. It is recommended that women with a genetic tie to breast cancer undergo a preventative mastectomy 10 years prior to their family member’s initial diagnosis.
“He begged my mom for years. ‘Remove the other breast. It’s a ticking time bomb. I don’t care what you look like. I want you to be around for the next 50 years,’” recalls Rose.
Despite knowing her mother’s story, Rose says it was still difficult for her to make the decision to get a preventative mastectomy, too. As a late bloomer, she had just gotten her breasts. “I was the offbeat kid in high school. You know, I played guitar in a punk rock band. Was never the pretty girl,” she says. In college, she began embracing her femininity and even joined a sorority. “So finally just becoming a woman, it was a hard thing to have to fathom that I would have to give that up. And give it up relatively soon.”
She later found a breast cancer charity pageant and she considered it her “last hurrah.” Surprisingly, Rose won and it changed the trajectory of her life. She later entered the Miss Maryland USA pageant in 2011 and won that too. She went on to compete in Miss USA in 2011 and, after winning Miss District of Columbia, competed in the 2013 Miss America pageant.
After sharing her decision to undergo a double mastectomy with her friends, she also decided to include it—along with preventative health care—as part of her Miss America platform.
“For me, it was a really unique experience because having a charitable platform and being able to talk about my mom’s life and have her experience not be in vain—have her life and the loss of her life inspire other people to take charge in their health care—was honestly therapy for me,” recalls Rose. Her story soon garnered international attention, making the cover of People magazine. She later appeared on television shows like “Good Morning America” and “Today” and on networks including CNN.
“People were kind of blown away that a young person would voluntarily remove their breasts for a cancer that didn’t exist,” she says. And while most people were supportive, some were upset by the news. People sent her father hate mail and a meme about her choice went viral. “I’m really grateful I have very good friends, a supportive family. And I think I have thick skin too,” Rose says. “Growing up, losing so many family members, you have to be a little bit resilient, so I was able to push through that negativity and decide for myself that it was the right choice.”
However, getting the surgery was a lot harder than she expected. “I had moments of feeling like, ‘What am I getting myself into? Is this really the right choice?’” recalls Rose. “But there was always something in the back of my mind saying you’re going to be okay. You’ve done your due diligence. You’ve researched this fully.” Rose ultimately underwent an under-the-muscle reconstruction with a two-step procedure, including expanders, for an exchange surgery. Minor complications delayed the process and Rose says it ultimately took her a year after her exchange to not think about it every day. “You know, my life wasn’t going to be permanently marred from the surgery,” she says.
And while it has been many years since Rose underwent and recovered from her mastectomy, she continues to work as an advocate for the breast cancer community. Prior to COVID-19, Rose regularly traveled around the globe, giving motivational speeches and appearing in events like AnaOno’s 2020 NYFW show.
“This is something I certainly never envisioned for my life,” says Rose, who wanted to be a constitutional attorney and become the first female governor of Maryland. She had “previvor’s guilt” for a long time. “I saw all these women out there who had battled cancer and had a mastectomy and why was my voice important? Why wasn’t it them?” she begins. “Until there were other people saying, ‘I wouldn’t have had this surgery had I not seen someone who was able to move on with their life.’”
Rose takes her role as a supporter so seriously that she recently launched a new nonprofit, The Previvor, which aims to educate people about their options for optimal breast health. “Being public in this space, I constantly had people reaching out to me about what type of surgery did [I] have, what kind of reconstruction, what options were out there,” says Rose. “I quickly realized there was no one comprehensive place that women could go to to learn about their options. And there are options about everything.”
Enter The Previvor, a digital, accessible platform that quickly and seamlessly provides information so people can make informed decisions and advocate for themselves. “I really want to be able to continue to take the voice of other women in this community to create a more comprehensive platform, so that women just feel positive and empowered going into this choice,” Rose says. “I think the next chapter is moving away from my story and having it be the collective our story.”
To learn more about The Previvor, visit theprevivor.org.