P5-15-01: Words Matter: Influence of DCIS Diagnosis Terminology on Patient Treatment Decisions.
Authors: Omer Z , Hwang ES , Esserman LJ , Ozanne EM 
Published: June 2012

Abstract
Background: Treatment of ductal carcinoma in-situ (DCIS) poses significant challenges. Although retrospective studies suggest that most cases of low grade DCIS will never progress to invasive disease, it remains difficult to accurately identify those patients at greatest risk. In this situation where many diagnosed tumors could follow an indolent course for the patient's lifetime, both systemic therapy and watchful waiting could be reasonable options, similar to those currently offered to patients with early prostate cancer. One strategy that has been suggested to reduce overtreatment is to use terms other than “ductal carcinoma in situ” when explaining a diagnosis of DCIS to a patient. In the current study, we have investigated the effect of terminology on women's stated treatment preference for DCIS. Methods: Women 40–65 years of age were recruited from a database of volunteers at an academic hospital. Subjects with a personal history of breast cancer were excluded. Endpoints were gathered from a web-based survey. Each subject was presented with three different scenarios, each of which used a different terminology for DCIS: non-invasive breast cancer, breast lesion, and abnormal cells. The scenarios included a detailed explanation of the risks and benefits of three treatment options: surgery, systemic treatment only and active surveillance. After reading each scenario, the subject was asked to choose among the treatment options and to explain her choice.
Results: 187 subjects completed the survey. More women chose active surveillance when DCIS was described using the terms “abnormal cells” or “breast lesion” than using the term “non-invasive cancer” (Table 1). The majority of women (97/187, 52%) changed their treatment preference when a different term was used to describe DCIS. Of the 97 women who changed their treatment preference, 47 (48%) chose surgery when the term “non-invasive cancer” was used to describe DCIS, but chose a less invasive treatment when “cancer” was not used in the diagnosis. Of 90 people who did not change their treatment preference, 39 (43%) chose active surveillance.
Among the three treatments, the percent of women who chose surgery was the highest (84/187; 46%) when the term “non-invasive cancer” was used. 47/84 (56%) of the women who chose surgery when using the term “non-invasive breast cancer” changed their treatment preference when a different term was used. 36/84 (43%) switched to active surveillance while 11/84 (13%) switched to medication.
Conclusion: These results support that the specific terminology used to explain a diagnosis of DCIS influences patients’ treatment preference. Moreover, we found that women may entertain treatment preferences other than surgery for DCIS when the tradeoffs of each choice are clearly explained. Avoiding the word “cancer” in the diagnosis may offer a strategy that reduces fear-based treatment decisions and may reduce the burden of overtreatment for DCIS.

Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P5-15-01.