Listening to Women: Expectations and Experiences in Breast Imaging

Those who discuss breast cancer detection and diagnosis with women know that many patients have misconceptions and anxieties about mammography. Some patients may misunderstand screening recommendations of their primary care provider or receive misinformation from friends, family, or other sources. Other women might be confused by changes or updates in official recommendations about the frequency for screening mammography or the age to begin obtaining mammograms. Still others might not be aware of breast cancer mammography screening coverage by the Patient Protection and Affordable Care Act (ACA), requiring that all new private insurance and Medicare plans eliminate cost-sharing by patients. Furthermore, healthcare providers can add to the confusion if they are not informed about the latest guidance. Anxiety about breast cancer screening can occur especially in women who have been called back for additional tests based on an inconclusive mammogram. In a recent database review of 1,723,139 women who received a screening mammogram between January 2011 and June 2013, Alcusky and colleagues found that 15% were recalled,1 while other studies reported recall rates between 10–14%.2,3 Most recalls result in “false positives,” meaning that additional testing ultimately yielded a benign outcome. Additional tests can include diagnostic mammography, breast ultrasound, breast biopsy, or magnetic resonance imaging. The majority of recalls reveal normal tissue, cysts, or other benign processes.4 The denser the breast tissue5–8 and the more annual mammograms a woman has had, the greater the probability of a callback and a false positive finding. False positives have been shown to increase patient anxiety in the short term,9 temporarily reduce quality of life,10 and lead to worries about breast cancer that can last for several years beyond the resolution of a false positive diagnosis.11 Anxiety and fear have been reported to have a major impact on breast cancer screening behaviors.12 As Harvey and colleagues note in a recent report, behaviors and responses to healthcare screenings can vary based on race/ethnicity and socioeconomic factors,13 perhaps helping to explain the greater fear of the healthcare system among African-American women.14 This undoubtedly plays a role in why African-American women present for diagnosis at later stages of breast cancer.15 We do know that almost all women experience increased anxiety when faced with finding a possible breast screening abnormality.16 Breast cancer is the most common cancer in U.S. women.17 The National Cancer Institute (NCI) of the National Institutes of Health projects 231,840 new cases of breast cancer in U.S. women and 40,290 deaths from the disease in 2015.18 NCI further estimates that 12.3% (1 in 8) of U.S. women with average risk will be diagnosed with breast cancer during their lifetime. Mortality from breast cancer has decreased significantly since 1990, probably related to improved mammography technology and detection, increased public awareness of the value of screening, and more effective treatments. Despite these improvements, breast cancer remains a serious health concern and is the second leading cause of cancer death among all women. There is one notable exception, which is for Hispanic women, in whom breast cancer is the number one cause of cancer death.17 Mammography screening is highly effective at detecting existing disease and reducing mortality. It has been associated with a 19% reduction in breast cancer deaths.19 The likelihood that mammography will detect existing breast cancer is 70% to 90% in most women; the exception is women with dense breast tissue where the sensitivity falls to 30 to 48%.20 Newer screening technologies including digital breast tomosynthesis (DBT) may yield even better results. This technology has the ability to both increase invasive cancer detection and decrease false positive results.4,21–24 In 2014, The Society for Women's Health Research conducted a national survey to assess women's knowledge and attitudes regarding mammography. We sought to identify misunderstandings about mammography among women of different racial/ethnic and age groups. We further sought to identify barriers that keep women from seeking screening mammography and motivators that would propel women toward screening. We queried participants about their emotional responses to being recalled for follow-up diagnostic testing and about what might lead them to use one mammography center over another for their breast cancer screening. Our results clearly showed areas where there are successes and areas where there are challenges. Our results demonstrate opportunities and potential ways forward to improve access and utilization of screening mammography. The authors believe that with improved access and utilization paired with new technologies, there may be potential for improved outcomes.