Breast cancer study offers free personalized screening plan | Live Well
Breast cancer is insidious.
It often feels like you can’t go a few weeks without hearing about someone you know or a friend of a friend or someone in the media who has received the diagnosis.
According to the National Cancer Institute, about 13% of women will be diagnosed with breast cancer at some point, based on data from 2018 to 2021, excluding 2020 due to COVID-19. It’s the second-leading cause of death from cancer in American women, second only to skin cancer. October is Breast Cancer Awareness Month.
It’s upsetting news when it happens to a friend of a friend. But it’s another thing entirely when it strikes your immediate family, which recently happened to mine. It’s surreal, especially when the person is young, healthy, vibrant and you’d just discussed mammograms and breast health with her over a midsummer lunch on a patio, where she sweet talked you into being better at doing your annual screenings after you admit you’re not always diligent.
And thank goodness she practiced what she preached and went for her own mammogram a couple of months later. Because where there was nothing of concern before was now DCIS — ductal carcinoma in situ or stage 0 breast cancer. She made some decisions about treatment and resolved the situation, hopefully forever.
In light of all that, I’ve been more eager to read anything that talks about breast health and breast cancer, which is how I came across the WISDOM Study, a breast cancer study founded by Dr. Laura Esserman in 2016. And yours truly is going to sign up as a participant.
“Wisdom’s premise is we have the wisdom and knowledge and science to understand breast cancer biology,” said Allison Stover Fiscalini, executive director for the WISDOM Study based at University of California San Francisco Breast Care Center. “But as far as screenings, many guidelines say women need to be screened every year at 40, but by having blanket guidelines we’re doing a disservice to women and not identifying women who should come in more frequently and offered risk-reducing strategies.”
About 43,000 women across the U.S. volunteered for the initial WISDOM Study, designed to collect data to test whether a personalized approach to breast cancer screening was as effective as telling women to get screened every year starting at age 40.
“Knowing that cancer is not one disease, we’re trying to create a more personalized way to screen versus family history, which is a crude way to assess risk,” Fiscalini said. “There are so many other risk factors, like genetics, breast density, race and ethnicity. Just looking at breast density or family history misses a lot of knowledge of what puts someone at risk.”
The first phase of the study, which closed last year, made an important finding about genetic risk: of the 23,000 women who did the genetic testing, 3% had a genetic mutation, and of those, 60% did not have a first-degree family member with a history of breast cancer, which is a risk factor for developing the cancer.
“So 60% would not have known they were at risk,” Fiscalini said. “When you go into see your doctor and are curious about your risk and want to know your genetic risk, they will only order you a test if you have a strong family history. What we learned is there are many out there who did not have a family history and wouldn’t have been offered genetic testing by a doctor.”
A second WISDOM Study opened 15 months ago and now has about 10,000 participants. All U.S. women are invited to participate for free, though there are a few requirements: You must identify as female, be age 30 to 74 when you enroll, and not have had breast cancer or DCIS.
Participants choose between two groups: annual or personalized. Women in the annual group will be recommended to get annual mammograms, which is the most often recommended screening protocol for women starting at age 40 by U.S. health care providers. Women in the personalized group will receive their own personalized screening plan based on their risk factors for breast cancer. They also will get a free at-home genetic testing kit that tests saliva for nine genes associated with breast cancer risk, including BRCA1 and BRCA2.
The study also offers a breast health decisions tool personalized with your own information and breast health specialists who will provide consultations to all identified as high-risk. If you are deemed higher risk you should be screened every six months and given risk-reducing medicines, Fiscalini says.
“We rely on local physicians for mammograms or MRIs,” Fiscalini said. “We provide back risk assessment information, particularly for those who are high-risk and should get MRIs in addition to mammograms. We provide risk scores back to support them ordering those and getting approval. We provide a letter of medical necessity. It has all the risk numbers in there that indicate a person meets the guidelines for additional screenings.”
The study will shift its genetic testing beginning in mid-October to an hereditary cancer panel. It will still test for the nine genes, plus new breast cancer genes that are rare but worth testing, Fiscalini says, and additionally, several other genes related to other cancers.
“We’re still most interested in breast cancer genes,” Fiscalini said, “but it’s an added bonus for participants to get an expanded cancer panel.”
This second phase of the study differs from its predecessor in several ways, including the age of participants, who can now be as young as 30. Women who are in their 30s aren’t included within the typical guidelines of when to get screenings, and if they receive a breast cancer diagnosis, it tends to be more aggressive.
“There are women who may not know they have high risk because they don’t know their family history or don’t have many women in their family or don’t talk about health with family members,” Fiscalini said. “Starting to think about breast health and risk assessment at younger ages is important.”






