Abstract

Background. To promote informed decision making about mammography, clinicians are urged to present women with complete, relevant information about breast cancer and screening. Understanding women’s current beliefs may help guide such efforts by uncovering misunderstandings, conceptual gaps, and areas of concern. Objective. The authors sought to learn how women view breast cancer, their personal risk of breast cancer, and how screening mammography affects that risk. Methods. Forty-one open-ended semistructured telephone interviews with women selected from a national database by quota sampling to ensure a wide range in demographics of the participants. Results. Almost all respondents viewed breast cancer as a uniformly progressive disease that begins in a silent curable form (typically found by mammograms) and, unless treated early, invariably grows, spreads, and kills. Some women felt that any abnormality found must be treated, even if it was not malignant. None had heard of potentially nonprogressive cancers, and when informed, most felt that the uncertain prognosis of such lesions reinforced the need to find and treat disease as soon as possible. Women expressed a wide range of views about their personal risk of breast cancer. Although some saw breast cancer as a central threat to their health, many others cited heart disease, other cancers, violence, and trauma as greater concerns. Most recognized the importance of “uncontrollable” factors for breast cancer such as age, sex, family history, and genetics. However, other “controllable” factors with little or no demonstrated link to breast cancer (e.g., smoking, diet, toxic exposures, “bad attitudes”) were given equal or greater prominence, suggesting that many women feel considerable personal responsibility for their level of breast cancer risk. Similarly, although women recognized that mammography was not perfect, almost all believed that failure to have mammograms put one at risk for premature and preventable death. When asked how mammography worked, almost all repeated the message that “early detection saves lives,” suggesting that advanced cancer (and perhaps most cancer deaths) reflected a failure of early detection. The belief in the benefit of early detection was so strong that some women advocated scaring other women into getting mammograms because it is “better to be safe than sorry.” Conclusions. Women view breast cancer as a uniformly progressive disease rarely curable unless caught early. The exaggerated importance many attribute to a variety of controllable factors in modifying personal risk and the “danger” seen in failing to have mammograms may lead women diagnosed with breast cancer to blame themselves.

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