Following the release of the national clinical treatment recommendations for ductal carcinoma in situ (DCIS), consumers' and surgeons' characterisation of this disease was assessed. Telephone interviews were conducted with 231 women diagnosed with DCIS, in Victoria, Australia in 2006/2007 and 63 treating surgeons completed a mailed survey. The main outcome measures were: women's diagnostic experience, women's and surgeons' description of DCIS, women's understanding of DCIS, confusion and worry about the disease and risk perceptions. While the majority of women had not heard of DCIS prior to diagnosis, most reported a positive diagnostic experience. Surgeons' and women's description of DCIS were consistent. Women understood that DCIS is a contained disease (86%), can progress (88%) and treatment aims to prevent invasive cancer (97%). However, only 13% understood that DCIS alone cannot spread to other parts of the body. A quarter of the women were confused about the risk of DCIS spreading. Younger women had more concerns about developing breast cancer (P= 0.008) and the disease spreading (P= 0.002) and rated their risk of invasive disease higher (P= 0.007). Most women diagnosed with DCIS in 2006/2007 understand the 'early, contained nature' of the disease, but understanding of the 'non-invasive' nature of DCIS could be improved.