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It’s time to face facts: young women get breast cancer, too

Volpara CEO — Teri Thomas – Published on October 14, 2022

At age 32, Sally Ride became the youngest American to go to space. At age 37, Maryam Mirzakhani became the first woman to win the Fields Medal in mathematics. Jane Goodall, at 26 years old, made one of the most groundbreaking biological discoveries in history.

Women under age 40 help solve dire social ills and make groundbreaking discoveries. Households rely heavily on them to raise families, companies rely on them to produce, healthcare providers rely on them to heal, and schools rely on them to educate. But society has not sufficiently prioritized young women’s health. Young women determine our futures. It is only right that we preserve theirs.

Rise in breast cancer in women under 40

Young women are generally not part of the breast care conversation—it’s thought of as an older women’s concern. Breast cancer is a staggering population health problem. About 1 in 8 women in the United States will develop breast cancer in their lifetimes.i Nine percent of breast cancers are diagnosed in women under age 45,ii and those cancers tend to be diagnosed at later stages and are usually more aggressive.iii On average women between ages 21–44 are diagnosed at Stage II, whereas women age 45–64 are most commonly diagnosed at Stage I.iv In 2020, the American Cancer Society estimated that over 11,000 women under age 40 would be diagnosed with breast cancer and over 1,000 of them would lose their lives to the disease.v Sadly, many of these cancers could have been caught

Call for a new approach

Different medical societies recommend breast screening guidelines based on the age of “average-risk” women. This is a flawed and confusing approach that negatively impacts women’s health. Widespread disagreement about the best agevii to start screening discourages participation, reduces adherence to recommendations, and delays screening. More importantly, these confusing guidelines distract from the crucial criteria of “average risk.” In fact, only 60 % of eligible US women are screened with mammography each year.viii And women who don’t comply with routine screening recommendations are two times more likely to die from breast cancer.ix

Societies whose members are experts in women’s health, such as the National Comprehensive Care Network (NCCN), American College of Obstetrics and Gynecology (ACOG), and the Society of Breast Surgeons (ASBrS), not only recommend screening begin at 40 but that a risk-assessment be performed at age 25 to determine the right age to commence mammography screening or cancer prevention interventions. Most women are unaware of their breast cancer risk status,x and unfortunately, there is no agreement as to how and when to assess lifetime breast cancer risk for women.

Few doctors actually assess risk at age 25. This is a dire missed opportunity. Without a comprehensive risk assessment, it is impossible to know whether a woman falls into an “average” or “high” risk category unless a woman’s medical or family history makes it obvious. This means that her risk-profile could remain dangerously opaque until into her 50s! This ostrich approach costs many lives and impacts many families.

Risk assessment should be a regular part of all wellness visits to a primary care or OB/GYN physicians. It is high time for this to happen. A case in point is Keri Stephens, whose high-risk status was almost overlooked. When she was 37, she was under the care of an OB/GYN for gynecological issues. The only reason she was referred for genetic testing was because she mentioned that her aunt was diagnosed with breast cancer in her 40s. “I’d had so many visits before where I’d mentioned that my aunt was diagnosed with breast cancer in her 40s and there was never discussion about genetic testing. People need to know their genetics and their risk in order to make the best choices for themselves.” Keri tested positive for the CHEK2 genetic mutation and learned her lifetime risk of developing breast cancer was 40 to 60 percent. She chose a prophylactic double mastectomy to reduce her risk of developing breast cancer significantly. Her goal now is to educate women about the importance of self-advocacy, genetic testing, and preventative care.

The path is here today

Younger women are among the easiest demographic to care for. In the United States, young women go to doctors. In fact, 90 percent of women ages 26–35 and 93 percent of women ages 36–49 report having seen a doctor in the previous two years.xi Yet primary care physicians feel ill-equipped to talk about genetic testing with their patients.xii Only a third of providers have ordered genetic tests for their patients and only 40 percent feel knowledgeable about the genetic basis for common illnesses.xiii

Early risk assessment can become mainstream. Campaigns like the CDC’s Bring Your Brave and FORCE’s XRAY program indicate an institutional appetite for risk assessment of younger women. But campaigns alone cannot generate real change without providers’ support. It is time for providers to embrace and prioritize earlier risk assessment.

Technology is also available in electronic health records (EHR) systems such as Epic and Cerner to make earlier risk assessment readily accessible. Without leaving the EHR during a patient visit, a provider can use the Tyrer-Cuzick version 8 model to assess a broad range of risk factors including age, BMI, breast density, history of breast disease, and family history. This assessment determines whether a younger woman needs earlier screening or additional imaging. Also available are the National Comprehensive Cancer Network (NCCN) guidelines to help determine whether a patient needs genetic testing―as well as models for ovarian, endometrial, colorectal, and pancreatic cancers for even more robust population health management.

Providers are the frontlines of change

Physicians have the power to identify at-risk patients at a much earlier age by instituting a risk assessment for all women between ages 25–40. Providers wield the power, with or without legislation or society guidelines, to make low-cost, lifesaving cancer risk assessment part of routine exams. When this happens, it will save many young women’s lives.

Almost all the extraordinary women mentioned in the first paragraph lived past age 50―all but one. Maryam Mirzakhani died from breast cancer. She was only 40 years old. Her daughter was only six. Imagine what Mirzakhani could have accomplished with another 40 years. Let her tale be a cautionary one to us all. Let us take the time now to make earlier risk assessments the standard of care. By catching these cancers early enough, we can prevent them from claiming more young lives.

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