FORCE is dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. We believe no one should have to face hereditary breast and ovarian cancer alone.
Recommended changes for breast cancer screening by the United States Preventive Services Task Force (USPSTF) are getting a lot of attention and proving to be controversial.1 The task force:
FORCE disagrees with these screening guideline changes and believes that they will cost lives, lead to confusion, make it more difficult for women to weigh the benefits and risks of screening for themselves, and more difficult to get insurance reimbursement for screening.2 We strongly encourage the government and health care community to ensure that all women have access to risk-assessment expertise and tools that allow them to understand their personal risks and thus make informed decisions about their care.
Facing Our Risk of Cancer Empowered (FORCE), the only national nonprofit organization devoted to people and families affected by hereditary breast and ovarian cancer, is committed to providing information, education, and advocacy to empower women to make informed decisions about their health, including decisions about cancer screening. We are concerned about any policy changes that affect breast cancer screening guidelines and that might affect health care coverage for women.
The USPSTF recommendations specifically apply to women of average risk, but these changes will also detrimentally affect members of the high-risk community we serve, for whom young-onset breast cancer is a particularly important issue. With a lifetime risk for breast cancer as high as 87%—and much of that risk occurring before age 50—women with inherited genetic mutations or a strong family history of cancer face a disproportionate risk. Their cancers tend to develop at a younger age, are more aggressive, and are often found at a later, less curable stage. Because of underutilization of genetics experts and risk-assessment tools, many learn about their high-risk status only AFTER THEY ARE DIAGNOSED with breast cancer detected by mammogram or breast self-exam. For this segment of our community, access to surveillance is critically important and can lower the risk of breast cancer mortality. Before a recommendation can be made to increase the age at which mammographic screening should begin and decrease its frequency for women at average risk, steps need to be taken to ensure that women are provided an accurate assessment of their personal risk so that women at increased risk are identified and not harmed by these sweeping changes.
FORCE appreciates and respects the USPSTF’s expertise and the value of reviewing scientific research on critical issues affecting public health, however we disagree with their conclusions and recommended screening changes based on this research. One task force concern is that women ages 40-49 who are routinely screened are more likely to undergo multiple biopsies which are usually negative. Yet many women, particularly those in the community we serve, feel that the risk of missing a single breast cancer far outweighs the risk of potential additional biopsies. Further, although the USPSTF study analyzed the risk/benefit of mammography as a function of a woman’s age they did not consider the potential contributions of race and ethnicity. Investigators did not state the racial and ethnic composition of study participants and there was no analysis of the risk/benefit of mammography in African-American and Latino women. Finally, although we appreciate the importance of viewing lower mortality rates as the ultimate goal of screening, the task force did not take into account the benefit of finding cancer at an earlier stage, thereby avoiding debilitating treatments such as chemotherapy.
Research shows that the health care community underutilizes genetics experts and risk-assessment tools and importantly, that the high-risk community DOES benefit from BSE and mammography. A recent study from Harvard, for example, found 71% of women diagnosed with breast cancer at age 40 or younger discovered their breast cancers by self exam. The women were rarely offered genetic testing even though half of them had a family history of breast cancer and all qualified for referral for genetic counseling and testing based on published guidelines. Researchers concluded, “These results underscore the importance of identifying young women who are at high risk, performing appropriate genetic testing and delivering appropriate mammographic and MRI screening.2 At the annual meeting of the American Society of Breast Surgeons, Duke University researchers demonstrated that breast self exam (BSE) can detect new breast cancer in high-risk women, stating, “Our results provide evidence that BSE should not be abandoned as an adjunct for breast cancer education, as well as a surveillance tool for high-risk women.”3
Although it is not perfect, mammography does save lives, and we must apply all the means we have to save as many lives as we can. By delaying screening mammography until age 50 we miss opportunities to identify breast cancers in high-risk women. Limiting mammography after age 50 to biennual screenings means many aggressive, quicker-developing, interval breast cancers (cancers that develop between screenings) will go undetected until they are advanced and much harder to treat. We are concerned that if implemented, these recommended changes will cost lives.
We believe the new guidelines will lead to confusion, making it more difficult for women to weigh the benefits and risks of screening for themselves, and more difficult to get insurance reimbursement for screening. We strongly encourage the government and health care community to ensure that all women have access to risk-assessment expertise and tools that allow them to understand their personal risks and thus make informed decisions about their care.