'Well, have I got cancer or haven't I?' The psycho-social issues for women diagnosed with ductal carcinoma in situ

Objectives: To explore women's experience of being diagnosed with ductal carcinoma in situ (DCIS) in relation to the following: response to the diagnosis; understanding about the diagnosis; satisfaction with information; satisfaction with the level of involvement in treatment decision-making and satisfaction with support services. Design: An explorative descriptive qualitative design was used to facilitate an in-depth exploration of women's experiences. Setting and participants: Five focus group interviews were conducted in New South Wales (NSW), Australia, involving 26 women diagnosed with DCIS. Results: DCIS is a non-invasive breast disease, that in most cases will not recur if treated, and cannot of itself metastasize to other parts of the body. However, this study found that women were confused about whether or not they had cancer that could result in death. Women's confusion was compounded by the use of the term 'carcinoma' and by the recommendation of treatments such as mastectomy. Women's confusion was not alleviated by appropriate information, with most women reporting dissatisfaction with the information they received specifically about DCIS. Conclusions: This study identifies that a diagnosis of DCIS has a significant psychological impact on women. The communication challenges highlighted in this study are not only relevant to DCIS but to any other disease in which the natural history is uncertain and the evidence about treatment effectiveness is still emerging. Further research is needed in areas such as DCIS to explore the difficulties experienced in doctor-patient communication and their impact on patient outcomes, and how to optimize doctor-patient communication.