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Breast cancer patients talk about their experiences on website


Patients who have been newly diagnosed with breast cancer now have access to the experiences of other people living with the disease via the multi-media website DIPEx (Database of Individual Patient Experiences), a resource of patient interviews in written form, audio and video clips. From today [13 Feburary 2002] the DIPEx website includes a new module on breast cancer, in addition to hypertension and prostate cancer.

The aim of the new module is to prepare those diagnosed with breast cancer for the decisions they must make about their future treatment, and to give support to those living with the disease through sharing the experiences of others.

One man and 45 women, including the writer and broadcaster Claire Rayner, who have all experienced breast cancer, talk about what happened at each stage of their illness. The interviews cover the full range of experiences including the impact of the illness on their own daily life and that of their family and friends, as well as their treatment choices and the effects these had. The interviews can be watched as video clips, listened to or read on the website. The site also offers full and reliable information on the illness itself, answers commonly asked questions and has links to support groups and agencies.

Dr Ann McPherson, General Practitioner, Medical Director of DIPEx and researcher at Oxford University`s Department of Public Health and Primary Care, launched the project after she had been diagnosed with breast cancer herself. She said: `To be diagnosed with a serious illness such as breast cancer can be bewildering and frightening. It helps to know you are not alone. Most people know very little about the disease at the time they are first diagnosed. The choice of treatment in each case depends on many factors, which may mean that individual patients find it difficult to understand the particular choice that they are offered.`

One of the patients sharing her experiences on the website is writer and broadcaster Claire Rayner. She said: `Anything that helps patients to know that they are not alone whatever their condition is an enormous help when they are ill or frightened. If you are having an operation, talking to someone who has already been there cuts the whole experience down to size, believe me I know.`

Peter Cardy, Chief Executive of the UK charity Macmillan Cancer Relief, which supports the site, said: `This is a unique resource for people with cancer and those close to them. We know, through our specialist nurses and doctors and our links with cancer self help and support groups, that it helps so much to hear people describing in everyday language their real experiences of living with cancer and its treatment. Macmillan is delighted to support the work of DIPEx.`

Barbara Hott | alphagalileo
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