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

Abstract

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 ÔcarcinomaÕ 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. impact on patient outcomes, and how to optimize doctor-patient communication.

The challenge of being diagnosed and treated for ductal carcinoma in situ (DCIS)

“…Similar findings have been reported by De Morgan et al (2002) and Bluman et al (2001). Therefore it seems justified, and in line with previous commentary (Thornton, 1997), that raising awareness of DCIS in general and particularly before screening should be carefully considered so that women are more prepared and aware of the condition.…”

“…Women in the study held diverse perceptions about the condition (De Morgan et al, 2002) that appeared to have an impact on their adjustment; especially feelings towards treatment, interactions with health professionals, information and support. The findings imply that perceptions of DCIS could influence acceptance, and previous research suggests that inaccurate perceptions can increase psychosocial distress (Buick, 1997;Cameron and Moss Morris, 2004).…”

“…The interviews lasted an average of 50 minutes. An interview schedule developed from previous research (De Morgan et al, 2002;Carrera, 2000;Mathieson and Stam, 1995) guided the interviews. The acceptability and suitability of the schedule was established by two key informants who had previously been treated for DCIS.…”

“…However, Rakovitch et al (2003) found that despite the generally positive outlook, DCIS patients expressed serious concerns and similar psychological morbidity to patients with invasive breast cancer. Research also suggests that women are confused about DCIS (De Morgan et al, 2002), have deficient knowledge about the condition and worry about their future cancer risk (Bluman et al, 2001). …”

Ductal carcinoma in situ of the breast. Long-term follow-up of health-related quality of life, emotional reactions and body image

“…The fact that the majority of DCIS is not life-threatening does not necessarily imply that women with DCIS experience less psychological distress than those with invasive breast cancer. Two qualitative studies report that women experience confusion upon the information that DCIS is not a life-threatening disease, while they are recommended a similar treatment to patients with invasive breast cancer [11,12]. In two American studies, women with DCIS highly overestimated their future risk of recurrence and the risk that their breast cancer would metastasize [13,14].…”