Fitting in the Breast Cancer Community as a 'Previvor'

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Knowledge about breast cancer is only increasing, thanks to dedicated campaigns and tireless advocates. And with advanced technology and genetic counseling, we’re not just catching lumps and dimples earlier, we’re also catching risk earlier.

Many women are now intimately acquainted with their risk profile after getting tested for the BRCA-1 or 2 mutations. Compared to the 12 percent average risk of developing breast cancer in a lifetime, research shows that women with BRCA mutations face as much as an 87 percent higher risk of getting the disease. As a result, some women are choosing preventative mastectomies to dramatically reduce their odds of developing cancer down the road. But where do these women belong in the breast cancer community, filled with survivors?

According to an in-depth, multi-year analysis by Treato, a website that analyzes online buzz and converts it into data, the conversations about breast cancer have turned into something of a tangled web. The data suggest women with “actual” cancer diagnoses are not keen on lumping themselves with BRCA-positive women seeking preventative double mastectomies, dubbed “previvors.”

“This is a hard thing to go through, but it is not the same thing as cancer,” one breast-cancer survivor says of women who find they have BRCA mutations in an online discussion. “Honestly, I don’t know if I can really even be called a breast cancer patient,” says another woman with stage-1 invasive ductal carcinoma and the BRCA-2 mutation.

Even women with early-stage breast cancer may not know whether they actually have cancer or are simply precancerous — and they may also be unsure where exactly they fit in the community or conversation. One discussion in an online breast cancer message board asks for thoughts on how exactly we should be talking about ductal carcinoma in-situ, a non-invasive, early-stage breast cancer contained within the ducts.

“Academically, I feel well-equipped to describe DCIS, and what it is and what it isn’t,” the writer explains in her post to the message board. “But emotionally, I guess I still feel a little confused. It’s like this little pinch. … It grips when I fill out a health questionnaire and it asks ‘have you had cancer?’ Or when I register for a charity run and there is a yes/no check box, ‘are you a cancer survivor?’ Or I bump into a work colleague who is stage 2 and has just lost her hair from chemo.”

Another message-board writer adds, “My personal opinion is that it isn’t a problem to have different names for different things, without diminishing anyone’s experience. There is a reason why many women with mets refer to themselves as having metastatic breast cancer, rather than just breast cancer. Their experience isn’t mine — emotionally, but more importantly, medically. Lumping everyone together makes everyone uncomfortable.”

Related: 23 Truths About Breast Cancer That Survivors Want You to Know

Women who develop breast cancer at various stages, and women who discover they carry the BRCA mutation and are at high risk, have different emotional concerns, says Sarah P. Cate, MD, an assistant professor of surgery at Icahn School of Medicine at Mount Sinai and lead physician for the Special Surveillance Breast Program at Mount Sinai Beth Israel.

“Those with the BRCA mutation live with the anxiety that you can get cancer at any time,” she tells Yahoo Health. “But cancer patients have a really unique journey. Many of them must have surgery, go through chemotherapy — and those treatments are really difficult to tolerate. They have no choice.”

Choice is a key factor in a lot of these discussions. Although traumatic, 30-year-old New Yorker Caitlin Lopez was thankful to have options when she tested positive for BRCA-1. “I was 27, and I had a little breakdown,” she tells Yahoo Health. “I met with a genetic counselor, who laid everything out for me, the pros and cons. I told my husband I didn’t want to go on anti-cancer drugs. I knew frequent screenings weren’t for me, because I’m a worrywart and didn’t want to have that anxiety every six months.”

Cailtin Lopez tested positive for BRCA-1 when she was 27. (Photo courtesy of Caitlin Lopez)

In the end, Lopez opted for a preventative double-mastectomy. “I looked at all options for reconstruction,” she says. I wanted to do it before I had kids. The only concern was that I wouldn’t be able to breastfeed, but I accepted it. I did the surgery, and only because I could do the procedure in one step.”

Breast cancer patients, however, don’t feel quite as lucky. Their choices are often more rushed and sometimes limited.

At age 28, Sarah Creely from Pennsylvania had the unique experience of finding out she had BRCA-1 and early breast cancer, before finally having a double mastectomy — all within four months. “I did have an aunt in her 40s with the BRCA mutation, who was having preventative surgery at the time,” Creely tells Yahoo Health. “She took a few months to make a decision, and did all the research. She said to me, ‘Don’t rush this.’ My thought was, ‘You don’t know. You have a choice.’”

When it’s cancer, the threat feels imminent, which Creely says invoked a different kind of anxiety than if she just had the genetic mutation. “Medically, there wasn’t a huge rush to have the surgery,” she explains. “But mentally, there definitely was.”

Although some experiences might be similar, insensitivity to the differences may rub some people with cancer the wrong way, says Karla Ivankovich, PhD, a counselor and adjunct professor of psychology at the University of Illinois, Springfield. “If we look at it from this perspective, this is an apples-to-oranges issue,” she tells Yahoo Health. “One cannot be likened to the other, and shouldn’t be. Survivors are thinking, ‘Look, I might have died and lost my family and all that I have – you were never put in that scenario.’”

Cate agrees. Having watched lots of women receive diagnoses, she says taking on cancer changes your life. “The psychosocial ramifications are huge, and they’re never really ‘over’ having cancer,” she explains. “It’s a lifelong diagnosis.”

For “previvors,” it’s not quite the same. Lopez is happy with her decision, almost two years later. “I have not had a fear,” she says. “There’s still a 5 percent chance [of developing breast cancer], but I’ve reduced the fears so drastically. I know what my breasts feel like now, the bumps and lumps, and places where the stitches have healed.”

She’s attended support groups through Bright Pink, an organization dedicated to breast and ovarian health. “When you are going through this, the sisterhood of women supportive of you is crucial,” Lopez says. “It’s stuff you think about that no one else does, like getting used to bigger, fake boobs immediately after surgery — hearing similar stories to yours helps.”

Related: 26 Parts of a Breast Cancer Diagnosis That ‘Shocked’ People the Most

Ivankovich says women who’ve had breast cancer tend to look at their situations very differently — “coming from a reactive place instead of a proactive place,” to be more specific. “You have to factor in mortality,” she says. “Point being, those with breast cancer have to endure the grief and loss of something that has been taken from them without option. They may see ‘previvors’ as having had a choice in a situation where it was not a guarantee, but a chance that they might have gotten breast cancer, and this can cause resentment.”

There’s room for everyone in the conversation, a place for everyone to find community. We can bridge the gap by respecting the journeys, Ivankovich says. Creely thinks it’s helpful to remember the commonalities, too. “Even without the mutation, we all have a higher risk, simply because we’re women,” she says.

Indeed, lots of people have watched a loved one endure a diagnosis, including 29-year-old attorney Erika Stallings from New York. “My story and situation is unique,” she tells Yahoo Health. “My mom had breast cancer, and I saw her through that, so I knew for a long time that if I tested positive for BRCA, I’d go through with surgery. So, I feel really fortunate that I didn’t have to go through cancer, or go through chemo and radiation.”

Stallings has knitted her story into the fabric of the breast cancer community, calling her prophylactic surgery “minor in my mind.” She shrugs off the idea that she made a brave decision to have a double mastectomy, and doesn’t feel comfortable with the label “previvor.” Instead, she channels her energy into activism, aiming to raise as much awareness for breast cancer as she can, especially among women of color.

She’s found her place alongside women, like her survivor mother, and keeps a grounded perspective about her experiences. “I have a lot of privilege, a lot of friends who took time off work to help, a lot of doctors that I knew could help me with options,” Stallings says. “But it means so much just to talk to people. I always tell people to have a positive outlook.”

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