Patient website highlights early form of breast cancer
01 Jun 09
A new online health resource will allow women to share experiences of being diagnosed with an early form of breast cancer called ductal carcinoma in situ (DCIS) after routine breast screening.
The resource, commissioned by the NHS Cancer Screening Programmes, forms part of www.healthtalkonline.org, the award-winning patient website based on Oxford University research.
DCIS affects thousands of women every year and its incidence has been increasing over the last few years: in 2006–7, the number of women diagnosed with DCIS after routine mammograms was over 3,000. Around 3% of women in the UK who show an abnormality in routine breast screening have DCIS.
Diagnosing and deciding upon best treatment for an individual woman is much more difficult for DCIS than for a clearly invasive cancer. 29% of DCIS detected in screening programmes is treated by mastectomy.
The online resource is based on research by the DIPEx Health Experiences group at the University of Oxford, and includes video and audio clips in which 35 women from across the UK talk about their experiences of DCIS.
‘This is the first site that offers the stories and experiences of women who have been diagnosed with DCIS, the uncertainty they felt and difficult decisions they faced,’ says Dr Suman Prinjha, who carried out the interviews. ‘It is aimed at patients, carers and families, as well as health professionals and the wider public.’
Most of the women interviewed had never heard of DCIS before and had no symptoms before the diagnosis. So most were surprised at the diagnosis, having gone for routine breast screening expecting to find nothing wrong.
Dr Ann McPhersonI am glad that the NHS has reacted quickly in the light of this and other research showing that women need better information when called for breast screening
Patricia, who was interviewed for the new site, said: ‘One of my concerns was that, if I hadn’t gone for this mammogram, I wouldn’t have known anything because I was always told, like lots of women, that you feel for a lump. There was no lump, there was no problems with the nipple, there was nothing like that at all... I think [breast screening] saved my life, probably.’
Another interviewee, Eileen, said: ‘It was just too big to be able to cut out enough tissue to remove it all safely, so they would have to remove my whole breast. Well this was a profound shock, because all the information and literature I had ever seen which had encouraged me obediently to go every three years for my mammogram, the screening programme, was catch it early, and you'll have less surgery, less treatment. This was the exact opposite…..If somebody's gone to the screening with no symptoms whatsoever, this is a profound shock.’
Many women were confused about how serious DCIS was. Terms such as ‘precancerous’, ‘pre-invasive’ and ‘non-invasive’ were not helpful in explaining about DCIS. Importantly, many of those interviewed wanted more information about DCIS and to hear the experiences of other women, including how they made treatment decisions. This is what the new section on www.healthtalkonline.org aims to provide.
Dr Ann McPherson, co-founder and medical director of DIPEx Research Group, says: ‘The research highlights several key issues for women found to have DCIS. Some questioned the need for a mastectomy and wished they had been told about the possibility of a DCIS diagnosis before they had gone for routine breast screening.’
‘I am glad that the NHS has reacted quickly in the light of this and other research showing that women need better information when called for breast screening,’ she adds. ‘The leaflet routinely sent to women prior to screening is being updated and the new one will include more and better information about DCIS. However, many women will still be left with a difficult decision as we still do not know which women diagnosed with DCIS will go on to develop more serious forms of breast cancer.’
The www.healthtalkonline.org website now includes sections on almost 50 different illnesses and health conditions, including cancers, heart disease, Parkinson’s disease, autism, HIV, diabetes, rheumatoid arthritis, and mental health. It is aimed at patients, their carers, family and friends, doctors, nurses and other health professionals.