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Why this 24-year-old is Instagramming her double mastectomy recovery

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Photos via paige_previvor/Instagram

In the process, she’s saving lives.

 

When Paige More flew home to Los Angeles after her double mastectomy in January, the 24-year-old Good Morning America talent booker was still processing what her future would look like. Despite being young and cancer free, More had preventative surgery to eliminate her risk of breast cancer altogether. Just two years prior, she was diagnosed with a gene mutation that significantly increased her risk for breast and ovarian cancers—BRCA1.

More is one of every 500 women in the United States who have inherited the BRCA1 or BRCA2 mutation from at least one of their parents—More got hers from her dad because, yes, men can inherit the mutation, too. Nationally, about 12 percent of women will develop breast cancer and 1.3 percent of women will develop ovarian cancer during their lives, but the BRCA1 and BRCA2 gene mutations multiply that risk significantly.

By recent estimates, 55 to 65 percent of women who inherit the BRCA1 mutation and 45 percent who inherit the BRCA2 will develop breast cancer by age 70. Additionally, 39 percent of women who inherit the BRCA1 mutation and 11 to 17 percent who inherit the BRCA2 mutation will develop ovarian cancer by 70, too.

 

 

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But despite being one of hundreds of thousands with this genetic mutation, More had trouble seeking guidance about what having the surgery would mean. Internet searches for the procedure and recovery process lacked gravely—she wanted to know what other women experienced and felt, so she too could know what to expect. But web results were clinical and intimidating, offering worst case scenarios that made her feel scared and alone.

It was while spending time with her 13-year-old sister Camryn that she realized she wanted to be a beacon for her sibling, someone who could tell her what the process is like in case she had to go through it as well. So she created Paige Previvor, an Instagram account dedicated to her personal journey post-mastectomies, in which More became the example she was looking for, helping thousands of other women face their own BRCA diagnoses and recoveries.

“When I was going through this, I didn’t have anyone to look toward… I wanted to see anyone I could relate to, and there was nobody,” More told the Daily Dot. “I didn’t want my little sister to have to feel like that if she goes through this—I hope she doesn’t, but if she does—I wanted her to remember, ‘My sister went through this and she was OK. She was still Paige.’”

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With just shy of 15,000 followers, the Paige Previvor Instagram account acts as a journal for More’s most intimate moments as a “previvor,” a survivor of a predisposition to breast cancer. More’s posts follow her surgery, like the “Hook’em Horns” sign she flashed after leaving the operating room (a shoutout to her alma mater, the University of Texas at Austin) as well as the silly, hopeful, and painful moments from her recovery.

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In one photo, the image that sparked her idea for the account, More poses shirtless in front of the famous pink Paul Smith Limited wall in L.A., rocking her leather jacket and aviators, her bandages covering her chest and her fresh mastectomy scars proudly on display. More had initially been reluctant to get in front of the camera—without her breasts, she wasn’t sure she’d feel confident in her skin ever again. But not wanting her own insecurities to get in the way of her sister’s fun, she left the house, bandages in tow.

When they arrived at the pink wall, in front of a handful of strangers trying to get their own shots, something clicked. So she took off her shirt, slipped her jacket back on, and posed.

“I never intended to take my shirt off, [but] I just had this overwhelming feeling like—I just felt like me, and I just felt beautiful like, ‘You know what, I’m proud of these scars, I think my scars are sexy, and I don’t need to hide them under my shirt, and I don’t need to be embarrassed of them,’” More said.

More shares a lot of moments like this: snaps of her looking like a badass posing in front of a mural, or making a goofy expression before a doctor inserts a large syringe for her implant reconstruction, or recording herself tossing her chicken cutlets and padded bras behind her, declaring her bralessness like a badge of honor. It’s encouraging to see someone having undergone a double mastectomy at such an early age remain positive about these dramatic changes in her life.

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But More’s feed doesn’t glamorize the pain of facing breast cancer in your early 20s. She avoids playing into the harshest critiques of social media—how we share our best moments in an effort to make our lives appear more stable than they actually are—by also posting some of her darkest times. She invites her followers to witness pangs of genuine vulnerability and fear that anyone else would share sarcastically on their fake Insta with the caption “EVERYTHING IS FINE, I’M FINE, REALLY,” or keep hidden altogether.

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In the post directly following her pink-walled power pose, More is crying. She’s sobbing, gulping in air between swipes at her face with the back of her hand.

“Do you feel like you have to be strong?” More’s mom asks from behind the camera.

“Yeah, I think I always feel like I have to be strong,” she replies with a cracked voice.

“I think I always feel like have to be strong for everyone, for our family, for our friends, for myself. I don’t not want to be. I want to be strong, and I feel strong, and I feel happy,” she continues, composing herself between breaths. But then the sobs hit her again, “But do think sometimes it’s still just scary, you know?”

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In another video, More talks through tears as she tells her followers about her depression, something she hadn’t faced before her surgery. She’s seeking professional help and following tips from her “breast friends” in her Instagram comments—people who have been affected by breast cancer to some extent, whether it’s facing a BRCA mutation diagnosis themselves, or having family or friends combating breast cancer.

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For More, talking her followers through what she faces has helped her better process these emotions without feeling too dependent on the people closest to her.

“I don’t have to pick up a phone or send a text and say, ‘I’m having a hard time.’ I can just let myself go through it and [record] myself or write it out and share it… I feel like I don’t want to be a burden to anybody, so [the Instagram] kind of helps me put it out there,” More said. “Sometimes I’ll go back to some of my earlier posts and I can’t even believe I wrote that—I forgot that that’s how I felt at this time, and it’s helpful to see how far I’ve come.”

These posts, where More shares her doubts with her audience, are what makes her account so essential to women with the BRCA gene mutation—she’s helped generate a community for people who didn’t know what to expect, and who are scared of the idea that they’ll have to undergo a surgery to remove their breast tissue, let alone a second surgery to avoid ovarian cancer.

“I was diagnosed with breast cancer at 25,” one woman commented on a photo of More right before her surgery. “I know the pain of a double mastectomy! This picture reminds me so much of myself, smiling the whole way but so afraid on the inside. Hope your recovery goes well.” 

“It really is a crazy feeling to go from feeling like you’re alone and there’s no one who understands, to now having hundreds or thousands of people who are saying, ‘I totally get it,’” More said. “It’s a beautiful and crazy and—I don’t even have the words for it.”

For some women, More’s story is more than a support system, but a literal life saver. Recently, a breast friend of hers who is diagnosed with the mutation decided to visit her doctor. Like More, she’s young, but her anxiety of having the double mastectomy made her avoid facing her diagnosis—after all, she had time to get it done. But More’s platform, along with the other women she had met through More, had given her the confidence to touch base with her physician. The doctor ended up telling her she didn’t have much time at all and needed to have the surgery within the next year.

“She was just in shock,” More said. “She’s doing her surgery this summer. So to hear someone say, ‘You saved my life,’ I don’t even know how to accept that.”  

Though Paige Previvior is less than three months old, it’s already taken More to walk the runway at New York Fashion Week for AnaOno, a company that designs lingerie and loungewear for people who have been affected by breast cancer, to hosting weekly breast friends meetups in New York for women affected by breast cancer, to being featured on People.com, and even on her own show, Good Morning America.

As for More’s sister, Camryn, she has another five years before she can get tested, and she is planning to wait until she graduates from college to do so. But Camryn has told More she’s ready to face the experience should she test positive for the gene—all because of the community of women her big sister helped cultivate.

“She’s [told me], ‘I’m ready because of you,’ and that really just like—I’m going to cry thinking about it, it just makes me so happy,” More said, her voice breaking once more. “I was on the Cosmopolitan Snapchat story, and so she [sent it to me] and was like, ‘You’re so cool!’ I just [felt] like, ‘Yes!’ That’s all I ever want is for my sister to think that I’m strong, and I want to be the best role model for her.”

Samantha Grasso

Samantha Grasso

Samantha Grasso is an IRL staff writer for the Daily Dot with a reporting emphasis on immigration. Her work has appeared on Los Angeles Magazine, Death And Taxes, Revelist, Texts From Last Night, Austin Monthly, and she has previously contributed to Texas Monthly.