Abstract
Pryke et al. confirm many of the points made in our previous work on DCIS. Our recent paper explored women's concerns about having a mastectomy for screen-detected DCIS 1 , including their information needs when making treatment decisions, particularly about mastectomy. As they point out, it is known that a DCIS diagnosis, understandably, causes much distress.2, 3 Less has been written, however, on what kind of information might be helpful to women. 4 6 We believe that the information given to women before screening and when making treatment decisions is crucial.
In our 2006 paper 7 based on in-depth interviews with women diagnosed with screen-detected DCIS, we highlighted that women know little about DCIS before being diagnosed with it and would have liked more comprehensive information about routine breast screening, including DCIS as a possible outcome, in order to make properly informed choices about whether to attend for routine screening. Specifically:
None of the women interviewed had heard about DCIS before their own diagnosis.
Some women were shocked by the large numbers of women diagnosed with DCIS annually, and questioned why the NHS breast screening leaflet they had received made no mention of it.
Women wanted more information about mammographic screening before attending-information about the benefits, risks and limitations of breast screening, and all the possible outcomes, including the possibility of a DCIS diagnosis.
Many of the women we interviewed learnt about DCIS and more about mammographic screening after their diagnosis, and then felt able to make an informed choice about whether to have mammograms in future. Knowing more about the risks and benefits of screening mammography, about DCIS, its incidence and complexity, a few women deferred appointments for mammograms or resolved not to have mammograms again. Having learned how poorly understood DCIS was, some of these women regretted ever having gone for screening and doubted whether it should be offered for a condition that doctors do not know how to treat and which could remain harmless for many years. These women said they did not want to be faced with the uncertainties associated with DCIS again and questioned whether DCIS was ‘worth knowing about’ when it could remain harmless for many years. A few women felt that, if they were to be diagnosed with DCIS again, they might defer surgery or refuse to have it at all.
Other women, including those who had not wanted more information or had believed they had invasive breast cancer, chose to continue having mammograms. Some said they found follow-up appointments reassuring because potential breast problems would be detected early. Several were glad they had been screened, believing that it had prevented them from developing invasive cancer and saved their lives, and therefore encouraged other women to attend.
We have highlighted these very important issues in our papers and also on our website, which focuses specifically on women's experiences of DCIS, showing extracts from women's interviews in audio, video and written formats: http://www.healthtalkonline.org/Cancer/ductal_carcinoma_in_situ.
We agree that there is now sufficient qualitative research evidence about the distress caused by a DCIS diagnosis, and hope that clinicians will recommend the Healthtalkonline site to women before screening and when faced with treatment dilemmas, so that they can make their decisions in the light of other women's experiences.
Although the NHS breast screening leaflet has been modified recently, it does not mention DCIS until page 10 of a 12-page booklet and then only briefly. 8 We hope that our work may raise awareness of the issues that are important to women who have or have had DCIS. It is crucial that women invited for routine breast screening are given the information they need to make an informed choice about attending. This is perhaps even more important now that the age range for screening mammography has been widened to include women from 47 to 73.