Despite a 1990 consensus recommendation from the National Institutes of Health (NIH) that lumpectomy plus radiation was the treatment of choice for early stage breast cancer, the United States continues to have the highest rate of mastectomy surgery among industrialized countries.
Why would a person knowingly undertake a far more severe form of treatment when a lesser one would suffice? A recent survey shows that only 74 percent of women diagnosed with early stage breast cancer (ductal carcinoma in situ or DCIS) chose breast-conserving surgery – even though 82 percent of their physicians had recommended the procedure.
“To answer this question, we investigate the framing of individual risk understandings by the broader cultural discourses surrounding the disease,” explain Nancy Wong and Tracey King (both Georgia Institute of Technology). “In-depth interviews . . . suggest that screening and treatment decisions are influenced by the predilection toward restitution narratives that exists in the United States and other Anglo-western societies. Reflecting culturally structured values toward illness, the dominant narrative of restitution is reinforced by the long-established biomedical model through its emphasis on personal agency, control, and survival.”
Due to increases in the availability and sophistication of mammographic screening, DCIS now accounts for approximately 20 percent of all breast cancer cases. The researchers find that women's individual understandings of breast cancer and the risks associated with detection, treatment, and reconstructive surgery are heavily influenced by the ideas of vigilant detection, aggressive treatment, and conformity in maintaining appearances.
“The burden of personal responsibility is so ingrained that women often feel that they are to blame for not detecting the disease earlier or for having failed to pursue the most aggressive treatment,” the researchers explain. “Furthermore, despite widespread information dissemination and requirements for physicians to discuss breast cancer treatments, women still do not translate this information into accurate risk assessments regarding their treatment options. Instead, they rely on stories of survivorship and restitution in constructing their risk understandings.”
They continue: “The impact of individual beliefs in restitution through aggressive detection and treatment is reflected in a broader sense by statistics on overall healthcare consumption in this country. From breast cancer and heart surgery to diabetes, numerous reports from general interest, business, and public health publications have raised concerns about the over-consumption of and runaway spending on medical treatments.”
The researchers suggest that increased efforts in education and intervention alone will not be enough to offset these implicit cultural biases. In order to understand why patients often choose difficult and expensive treatments that may not necessarily yield improvements in their quality of life or odds of survival, they reveal that we must also consider the deeply entrenched illness narratives that frame patient's interpretations of medical and risk information.
“Illness narratives allow us to convey, express, and formulate our experiences of illness and suffering, thus providing a platform for shared cultural experiences,” Wong and King write. “We hope that this research will direct more attention to the recognition and conceptualization of these alternative discourses within an expanded composition of illness narratives.”