Why a One-Size-Fits-All Approach to Breast Cancer Prevention Can Leave Women Vulnerable

When Heather Mann learned she had breast cancer, it was a complete surprise. “I had never thought that I was at high risk for breast cancer,” the 49-year-old says. “I don’t have any family lineage or history of breast cancer. My grandmother on my father’s side had breast cancer, but apparently that’s not usually a significant factor. So I was very surprised when I found out that I had a malignant tumor.”

Shelia Bauer ‘s breast cancer journey took a very different route. After her twin sisters died of the disease in their 50s, Bauer, now 73, assumed that she likely carried some genetic risk factors. For three decades, she got both a mammogram and an MRI every year to make sure no aberrant cells were seeding tumors in her breast tissue. And every year, she waited anxiously for the results; based on her sisters’ history, she simply assumed that she was at higher risk of developing the disease.

In her case, however, she was wrong.

Both Mann, who lives in San Francisco, and Bauer, who is from Cape Cod, are part of the WISDOM study, Women Informed to Screen Depending On Measures of risk, led by Dr. Laura Esserman, director of the Carol Franc Buck Breast Care Center at University of California, San Francisco. And because of the comprehensive evaluation of their risk factors for breast cancer, which includes genetic testing as well as their family history and lifestyle habits such as their diet and exercise regimens, that they received as part of the trial, they each learned that they needed to make changes to the way they were managing their risk for the disease. (Marc and Lynne Benioff, the co-chairs and owners of TIME, have been philanthropic supporters of Dr. Esserman’s breast cancer research. The WISDOM study receives software support from Salesforce, where Marc Benioff is chairman and CEO.)

Both women were already following existing advice to screen for breast cancer, adhering to the guidelines that vary a bit but basically suggest women over 40 start getting annual or biennial mammograms. But it turns out that schedule wasn’t the ideal one for either woman.

When the WISDOM team sent Mann a DNA testing kit in the mail as part of the study in March 2018, she provided a saliva sample and sent it back to the lab, curious about her genetic risk but relatively certain she didn’t harbor mutations that put her at increased risk for breast cancer. The results proved otherwise.

The test showed that Mann carried a mutation called CHEK2, which doubles her risk of developing breast cancer over the average risk. “Breast cancer wasn’t a thing in my family,” she says. “We really thought they needed to go back to the lab and recheck the results because they had the wrong patient or the wrong phone number. I was absolutely in shock.”

The CHEK2 mutation also puts Mann at higher risk of developing other cancers, so doctors now monitor her thyroid for any unusual growths. And instead of getting a mammogram once a year, “[the WISDOM] researchers recommended alternating between mammograms and MRIs every six months,” she says. “It ensures that if there’s anything that comes up again, it will be caught early. Finding out that I was CHEK2 positive directly impacted how I screen for breast cancer.”

In fact, Mann’s mammogram a month after her genetic test results continued to show no abnormalities, and it wasn’t until she had an MRI, as part of the WISDOM study, triggered by her genetic predisposition, in November 2018 that doctors found her cancer. “I had a clean bill of health from my mammogram. Six months later, I had an MRI, and they saw something. Then they did a biopsy, and it was breast cancer, early stage,” she says. “If I hadn’t participated in WISDOM, I never would have known that I had the CHEK2 mutation … which then resulted in me getting the MRI. If I hadn’t had the MRI I would never have known.”

Read more: Meet the Women Participating in the Study That Could Change Future of Breast Cancer

“To me, this is one of the great success stories of WISDOM,” says Esserman, who removed Mann’s cancer through surgery in January 2020. “Her tumor was very small, and she was able to do a fairly small surgery and take it out. And CHEK2 mutations are almost all hormone-positive, so by taking endocrine therapy, she reduced the risk that she would get breast cancer on the other side, and she didn’t feel that she had to have a bilateral mastectomy. And she’s done incredibly well.”

Mann says she is confident that the current six-month screening schedule, in which she gets alternating mammograms and MRIs, will catch any potential recurrence and is the best way to manage her cancer risk. “I know in the back of my mind, and I am able to sleep at night and look myself in the mirror because I know I’m doing everything I can,” she says. That also applies to her family members—she asked her sister to get genetically tested, and hopes her daughter, when she’s older, will also benefit from knowing her genetic family history for breast cancer and make similarly proactive choices about how she is screened for the disease.

Bauer is also thinking about her daughters and granddaughters and hopes that what she learned by joining WISDOM will help them as well. Because both of her sisters died of breast cancer, and an aunt passed away from ovarian cancer, for 30 years, her doctors recommended that she get an annual mammogram, MRI of her breasts and a pelvic ultrasound. While she followed their advice, she didn’t relish the experience. “It’s very, very stressful waiting for the results,” she says, which were spread out over the year, so “you spend a good part of your life doing that.” In addition, she is claustrophobic and being slid into the tight space of the MRI tube made her anxious—“but I’ve done it because that’s what the protocol has been,” she says. She also isn’t thrilled with the radiation exposure she gets every year from the mammogram, even though doctors say it’s at a low enough level to be generally safe.

So, when her genetic test in April didn’t reveal any significant mutations related to breast cancer, it was a huge relief on several levels. She could scale back her mammogram screening to once every two years, and she could rest more assured. “I thought, ‘oh my god I can exhale.’ I was just so relieved to know that I don’t carry [risk] genes,” she says. “Knowing that, I thought ‘thank God now my children and my two granddaughters possibly won’t have [them].”

Convincing her doctor to let her shift to getting a mammogram once every two years, however, is a little more complicated. Bauer is concerned that her relief might not be shared by her doctor, who for years has been advising her based on the assumption that she is at higher risk of developing the disease. Esserman has offered to speak to her physician and address any questions—something that she’s accustomed to doing as she encounters doctors who aren’t quite on board with the idea of tailoring existing screening guidelines to each woman’s individual risk. “I call their physicians and explain what we’re doing and why,” she says. “I’ve had many of those conversations, and most of the time, they are on board. We now have this tool that really goes through all the data—we have all of the prevention data, all of the risk data—and we have a model where we can explain it.”

As part of WISDOM, Esserman will also be looking at other genes, besides the 10 or so major ones that are now known to increase the risk of breast cancer. While these other genes and mutations might not change a woman’s risk of the disease on their own, certain groups of them, if they occur together, might. And those sets of mutations are what Esserman is hoping to isolate by comparing women’s genetic tests with whether they develop breast cancer or not.

For both Bauer and Mann, joining WISDOM has helped them to feel more confident that what they’re doing to protect themselves from breast cancer is the right thing for them, based on their specific risk for the disease, culling from their genetic makeup, their family history, their diets and exercise habits and more. “I think it’s insane that women have a false sense of security walking around and doing what they think they should be doing, getting a mammogram every year, and lo and behold, there could be cancer sitting in their breasts,” says Mann. “It feels almost negligent to be walking around not getting this information when it isn’t that complicated. We have the tools in place, but people are making decisions in a vacuum because they just don’t know.”

“I hope that we can change the way we do testing for all women,” says Bauer. “I really do believe it’s time, and we need to change.”