Abstract
Prinjha et al.'s insightful qualitative study demonstrates clearly the anguished responses of women to the predicament of screen-detected ductal carcinoma in situ (DCIS). 1 The findings confirm what has been known since the outset of the screening programme: a diagnosis of DCIS distresses women.2,3
However, we disagree with the conclusion that ‘Better information about the uncertainties and the rationale for mastectomy as a treatment may help women to make better informed choices and feel more comfortable about their decisions’ as this refers to information and decisions after screening and assumes that the rationale may not be questioned, still less rationally declined.
The results showed four key themes-around the women s understanding of DCIS and its treatment, but also their understanding of routine breast screening and their individual risk of developing breast cancer. We suggest that this is the nub of the difficulties.
When information about the uncertainties and rationale for treating DCIS is given at this late point women are likely to realize that in attending screening they took a gamble whose implications had not been explained and to feel that being ‘railroaded’ into serious surgery on insufficient evidence is at best questionable, at worst unwarranted. Rather than therapy, which they were led to expect, it is a pre-emptive strike. As difficult as ‘Sophie's choice’. Hence the familiar distress.
In light of recent screening mammography research 4 6 it would not be irrational to decline screening to avoid this predicament. Nor would it be irrational to decline treatment when mammograms and further tests have provided no additional information over and above what every woman already knows: that she may or may not, at some unpredictable time, develop life-threatening breast cancer. For those who go on to develop symptoms, increasingly successful treatments can be offered without the traumatic uncertainty. This evaluation cannot be made for an individual woman by doctors since the balancing of quantity of life over the obvious threats to quality in the face of unquantifiable risk depend on personal values which professionals cannot second guess or pre-empt as is current practice.
All practitioners in this field must have faced dozens, perhaps hundreds, of women in this predicament. Their profound suffering is obvious, indeed expected, and entirely avoidable. Yet screeners continue to give inadequate preparatory information,1,7,8 women continue to have dubious ‘cancer’ diagnoses’ and researchers go on studying their distress. Please let this be the last such study. Well-intentioned people must now be sufficiently perturbed by the serious harm caused to tens of thousands of women to ask themselves if they can carry on ignoring it. It is time to correct pre-screening misinformation 1'7'8 and end this institutional betrayal of women. What more does the NHS Breast Screening Programme need to know to stop the DCIS charade?