'A mastectomy for something that wasn't even truly invasive cancer.' Women's understandings of having a mastectomy for screen-detected DCIS: A qualitative study

Objectives To explore women's understandings of having a mastectomy for screen-detected ductal carcinoma in situ (DCIS). Setting Participants recruited throughout the United Kingdom and interviewed in their own homes by an anthropologist. Methods Qualitative study using semi-structured interviews and thematic analysis. Thirty-five women with screen-detected DCIS were interviewed, of whom twenty had a mastectomy. Results A qualitative thematic analysis of women's understandings of having a mastectomy for DCIS identified four key themes: understandings of routine breast screening; uncertainty about DCIS and its natural progression; uncertainty about whether a mastectomy is justified for DCIS; information gaps and treatment decisions. Women were often concerned that a mastectomy for screen-detected DCIS was a 'drastic' treatment for an asymptomatic, precancerous condition of which they had been previously unaware. Some questioned why they were treated with such urgency, even suspecting that their clinicians were responding to targets. Conclusion Given the uncertainties about DCIS and its complexity, it is important that women have the information they need to make treatment decisions. Better information about the uncertainties and the rationale for using mastectomy as a treatment may help women to make better informed choices and feel more comfortable about their decisions.