Yuen: Breast cancer in young women is on the rise. One survivor is talking about it – and all things 'Tetas.'

Vanessa Berrueta Zambrano followed her instincts this past spring when she felt a lump about the size of a piece of popcorn in her right breast. She knew she needed answers. But her clinic told her that a screening likely wouldn't be covered by her insurance because at age 39, she was too young.

"I don't care," she remembers telling the medical staff. "Do the mammogram."

Luckily, she insisted. It was breast cancer.

Breast cancer in women between ages 20 and 49 is still rare, with a prevalence of about 65 cases per 100,000 people. But the rate has been steadily ticking upward, with incidence among younger women climbing by nearly 3.8% annually from 2016 to 2019, according to a study published this year in JAMA Network Open. Research shows that women under 40 are more likely to die from their breast cancer than older women.

People like Berrueta fall into a paradox: Even though more younger women are getting breast cancer, mammograms and other screenings aren't recommended for women under 40. Some speak of feeling dismissed by their primary-care doctors or having to contend with insurance companies, even if they show they carry a higher risk for the disease.

"I don't know how many times I've heard stories of women who have noticed a breast lump, they see their primary care provider, and they're told, 'You're too young to have breast cancer,' so they don't do anything about it," said Dr. Douglas Yee, a medical oncologist who directs the Masonic Cancer Center at the University of Minnesota.

After her diagnosis, Berrueta, of Wayzata, navigated the news and aftermath by doing what she does best: talking and listening. She sought several physicians' opinions and met with as many survivors as she could, asking them about their biggest treatment-related regrets, how they combatted their fears, what they would do differently and their hopes for the future.

Only six months after her diagnosis, she's driven to continue holding those conversations. And now any of us can listen in: She recently launched a podcast called "Tetas" (the equivalent of "boobs" in Spanish).

Now Berrueta, a former dentist in her native Venezuela and swimsuit model, only has one teta, following a mastectomy in August. She conducts interviews in both English and Spanish.

"People in my Latino community, we don't talk about tetas," she said, clutching her chest for emphasis. "You see tetas, but you don't talk too much about tetas. Let's talk about tetas! Are your tetas healthy? Touch your tetas! And if you have a partner, touch their tetas!"

A club for healing

You can hear Berrueta's vivacious laugh and melodic voice as soon as she bops into Gilda's Club Minnesota in Minnetonka. She glides in wearing all pink — including a long, pleated skirt, sneakers, and a one-of-a-kind "Tetas" hoodie. The back spells out the acronym she devised: Touch yourself, Exercise, Take a diagnostic exam, Adjust your diet, and Stay aware.

A knowing smile emerges on the lips of Monica Gonzalez Mauritson, a breast cancer survivor and fellow Latina. "Where did you get your 'tetas' shirt?" she asks.

"I made it!" Berrueta responds.

Gilda's Club, a place for survivors and others affected by cancer to grieve, gather and find support, smells of crème brûlée french toast pulled straight from the oven. Over an elaborate breakfast prepared by volunteers, there's no need to overexplain what it's like to live with cancer. Mauritson tells Berrueta about her decision to dye her hair purple after losing so much of it to chemo.

These survivors know they may not be able to fix everything. But they can hold a space, said executive director Katherine Todd, for others to heal. "That's exactly what Vanessa is doing," said Todd, who lost her husband to colon cancer. "She's creating a new platform for people to find support for their own journeys."

Shaunequa James, the club's program director, says she is seeing more young cancer patients come through Gilda's doors. Some struggle with the grueling changes to their bodies. Others try to reckon with a future in which they cannot have children.

James, 33, has endured her own share of pain inflicted by the disease. She lost both her mother and grandmother to breast cancer when they were only in their mid-40s. As a Black woman with a family history, she knows she's at particular risk for breast cancer. But trying to justify why she needs coverage for annual screenings is a constant fight.

"It's like molasses to get insurance companies to really see the data and recognize that women are getting diagnosed younger and younger," James said. "I'm pretty sure they're tired of me. I've learned the language. That's what I do in my job, too, telling people how to advocate for themselves."

A troubling trend

Although researchers can't say for sure why more younger women are getting breast cancer, one risk factor is if they got their first period before age 12. Girls are starting menstruation earlier, exposing them to estrogen over a longer sweep of their lives. Inherited gene mutations and family history can certainly increase risk. And lifestyle habits — exercise, diet and alcohol consumption — also can't be ignored.

"The biggest challenge is, if you're at an increased risk or you're worried that you might be, what can you do as an individual to decrease that risk?" said Yee, the U oncologist. "That is not so clear."

Mammograms are not typically advised for women under 40 because they are less effective in younger women. Since breast cancer is still uncommon in young women, there will be a higher rate of false positive readings. And even recommending breast self-examinations for all young women may not change outcomes, even though most young women find their own cancers, Yee said. Trials that have studied women who examined their own breasts without mammography ended up having more procedures and biopsies, but no decreased risk of dying of breast cancer.

He can't argue against self-exams, but he said they shouldn't be a substitute for a clinical exam done by a physician, or an imaging procedure such as a mammogram or MRI for individuals at higher risk. (Breast cancer risk calculators can be found online.) And if young women do find a lump in their breast, Yee said they should insist on having an ultrasound or MRI to evaluate if it's normal.

Yee also recommends that women who are curious about their genetic risk take matters into their own hands. A California-based company called Color Health offers at-home saliva kits that can identify genetic markers linked to cancers.

No family history

Berrueta's journey since arriving in the United States more than a decade ago in hopes of pursuing a license to practice dentistry here, hasn't been without its bumps. Tuition for the dental program proved too costly, so she didn't enroll. She endured a relationship with an abusive man.

In February, Berrueta had no family history of breast cancer when she found a 2-inch-wide knot in her underarm. At the time, the doctor said it was likely scar tissue related to her implants. When a lump appeared in her breast a few months later, she didn't leave anything to chance. A biopsy confirmed it was cancer.

"I was very, very scared. I connected it with death," she said. "I didn't eat for three days. I was shaken. I didn't know how this story would end."

She called her mother and sister in Florida, and her father and grandmother in Venezuela to share the news. Berrueta traveled to Mayo Clinic to get a medical plan in place, a decision she does not regret even though it cost her several thousands of dollars for out-of-network care. (Through her work at an environmental nonprofit, she's found a sense of purpose but not mountains of cash.) A GoFundMe page helped raise money for her medical journey.

In August, she underwent a mastectomy to have her right breast removed. Her implants of 17 years are gone. At least for now, she has no plans to have reconstructive surgery.

"It was a huge part of my life and my career. In modeling, it's all about the bikini, the open jacket, the little top for Vanessa. On the other hand, I'm beyond only boobs," she said. "I'm falling in love with my new, different me."

Days before she officially launched her podcast, she suffered another blow: Her father, a cattle rancher in Venezuela, died of a heart attack.

Berrueta is still scraping to get by, but driven now more than ever to educate others and help them feel less alone. When she pursued the possibility of making a podcast, she didn't have the money to hire out the production. But she found an audio producer in Minneapolis who cut her a deal after she offered to regularly clean his office.

Her goal, she said, is to create a "pink wave" of community and support. Her first guest on the podcast was Randy Klauk, a Minnesota man living with stage 4 metastatic breast cancer.

Berrueta remembers how much her early conversations with other survivors helped her make sense of her diagnosis. Her advice to others is to sit with their pain, but never allow their fears to outweigh their sense of hope.

"The more we understand something," she said, "the less we fear it."