Shared Decision Making a Fantasy as Task Force Recommendations Put Women With Dense Breast Tissue at Risk for Undetected Cancers

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Despite touting the importance of shared decision making and empowering patients with information about benefits and harms of preventive services, the U.S. Preventive Services Screening Task Force (USPSTF) final breast screening guidelines place all women and especially those with dense breast tissue, about 40 percent of American women, at greater risk of having invasive cancers go undetected. Furthermore, despite decades of research, USPSTF fails to acknowledge the significance of the fact that dense breast tissue can hide cancerous tumors, making them difficult to detect on mammography alone. Empowered with knowledge about breast tissue density and other risks equip women for shared decision making with health care providers about their personal preferences for adjunct screening.

Participating in breast cancer screening has one sole purpose: to find cancer early in its natural history. An average-risk woman must not ignore her likelihood of having breast cancer, as more than 75 percent of women diagnosed with breast cancer fall within this average-risk group. Although the USPSTF report concludes that mammography is limited in dense breasts and added screening finds invasive cancers invisible by mammography, by not making a recommendation for disclosure and an opportunity for adjunct screening, it denies women access to this important health information. Invasive cancers are not just a nuisance; they can kill.

Moreover, USPSTF guidelines place a particular burden on women in their 40s, as it recommends that biennial screening begin at age 50, despite acknowledging that most lives will be saved by starting at age 40. Younger women have a greater likelihood of aggressive cancers. To deny women under 50 access to mammography screening, because of its limitations in detecting cancer in dense breasts, and, in turn, access to adjunct screening, is preposterous. Having no screening puts younger women at a higher risk for a later-stage disease. A 2015 study from the Netherlands concludes that stage at diagnosis of breast cancer still influences overall survival significantly in the current era of effective systemic therapy. Diagnosis of breast cancer at an early stage remains vital.

In addition, evidence indicates that women who are post menopausal and continue to retain their dense breast tissue are also at greater risk of breast cancer than the average population. Studies have concluded that high breast density increases the risk of breast cancers that have a relatively poorer prognosis. Furthermore, women who are given all the facts about the causal and masking risk of dense breast tissue are empowered to fully participate in decisions regarding mammography screening and supplemental screening.

Women have a right to access health information that affects them. Appropriate screening, discussed between physician and patient, is critical for women's health. When screening for breast cancer, dense breast tissue is not something to be ignored.

Congress passed the Protecting Access to Lifesaving Screenings Act (PALS Act) in December 2015 which placed a two-year moratorium on USPSTF breast cancer screening recommendations out of concerns that mammography coverage at no cost might be at jeopardy.

The lack of acknowledgement by health care providers of the impact of dense breast tissue on missed, delayed and advanced cancers catapulted me to legislative advocacy when I was diagnosed with advanced-stage breast cancer in 2004.

As a result of Connecticut leadership in education and advocacy, 24 states have enacted legislation requiring the disclosure of dense breast tissue through the mammography report. In the remaining states, notification is voluntary. In 2016, another 8 to 10 states have or will introduce density reporting legislation. Additionally, a federal bill is pending in Congress in both the House and the Senate.

Patients can only act upon what their doctors disclose to them. Without disclosing a woman's dense breast tissue composition to her and continuing with discussions about its impact on her access to an early breast cancer diagnosis, shared decision making about breast cancer screening remains a fantasy.