The shifting nature of women’s experiences and perceptions of ductal carcinoma in situ

Aim: This paper is a report of a descriptive qualitative study of the evolution of women’s perceptions and experiences of ductal carcinoma in situ from the period near to diagnosis to one year later. Background: Ductal carcinoma in situ is a non-invasive breast condition where cancer cells are detected but confined to the ducts of the breast. With treatment, the condition has a positive prognosis but ironically patients undergo treatment similar to that for invasive breast cancer. There is a lack of longitudinal qualitative research studying women’s experiences of ductal carcinoma in situ, especially amongst newly diagnosed patients and how experiences change over time. Methods: Forty-five women took part in an initial interview following a diagnosis of ductal carcinoma in situ and twenty-seven took part in a follow-up interview 9-13 months later. Data were collected between January 2007 and October 2008. Transcripts were analysed using a hybrid approach to thematic analysis. Findings: Women’s early perceptions of ductal carcinoma in situ merged and sometimes conflicted with their lay beliefs of breast cancer. Perceptions and experiences of the condition shifted over time. These overriding aspects were evident within four themes identified across the interviews: 1) perceptions of DCIS versus breast cancer, 2) from paradox to acceptance, 3) personal impact, and 4) support and interactions with others. Conclusion: This study represents one of the few longitudinal qualitative studies with newly diagnosed patients, capturing women’s initial and shifting experiences and perceptions of the condition. The issues identified need to be recognised in clinical practice and supported appropriately.