‘It’s Killing More People’

When she was 34, Nicole Wells did something she’d been doing since her mother taught it to her 20 years earlier. As she entered the shower, she performed a semiregular breast exam. This time, though, life didn’t proceed as normal. “I felt something hard beneath my right breast,” she says.

That’s when the attorney in her kicked in. “I fought for an earlier appointment,” she says. “I fought through three different providers telling me it was a ‘fatty mass.’ And on September 13, 2019, I heard the words, ‘You have breast cancer.’” It was stage 1.

“Had I not been taught the tools to check myself,” she adds, “I don’t know how big the tumor would have progressed.”

While undergoing treatment—16 rounds of chemo—Wells met Missy Peters, another young cancer survivor, who was working on a project photographing survivors under 40. “We rebranded her nonprofit and, in doing so, we surveyed over 450 survivors under 40,” says Wells. “Missy collected 100 subjects and stories.”

They found many stories of delayed diagnoses. “People are literally being turned away and dismissed because their providers feel they’re too young to have breast cancer,” she says. “Breast health education encompasses both the clinical exam, but then also the intuitiveness—as well as the knowledge of what’s normal and not normal for you.”

Mixed messaging from the American College of Obstetricians and Gynecologists hasn’t helped. The fact that young women are discouraged from self-examination, Wells says, “is wild to me. It’s free. Literally zero overhead. Like another minute or two of your time.”

An alarming rise of breast cancer deaths among women under 40 points to its necessity. “It’s almost like seeing a snowball in slow motion that you know is coming,” says Wells. “We know it’s gaining speed. We know it’s killing more people. No one is trying to stop it. So we have to do it.”

That’s why, in January 2021, Wells and Peters launched the Young Breast Cancer Project. “Our mission is to educate and empower both doctors and the general population under 40 to not just know what breast health is and recognize concerns, but also that providers take [concerns] seriously.”

People may know about lumps, she adds, “but they don’t know redness, dimpling, discharge, inverted nipple.”

The two women turned the data from their first project into a poster that’s been presented at cancer research conferences. The Young Breast Cancer Project is also part of a California research project which is working with an epidemiologist on a more comprehensive survey. Another program, the Survivor-Student Alliance, involves young women sharing their stories, along with the group’s data, to medical and college students. This year, they presented their first lecture at an osteopathic school in North Carolina.

“It was telling,” Wells says. “These were students that are going to be treating patients in the very near future. And they did not know that so many women under 40 ended up with breast cancer. In fact, some of them didn’t know women under 40 could get breast cancer.”

Feedback was positive, says Wells, who will be four years from remission this April. Her org is currently involved with training more volunteer speakers, broadening its board for both demographic and skill diversity, and fund development. She’s hoping for a ripple effect. “It literally means the difference between life or death,” she says.