I represent the Sheffield Breast Cancer Research Fund, which is part of the Sheffield Breast Care Support Group. I had breast cancer six years ago, which was successfully treated by surgery, chemotherapy and radiotherapy. I then went into a trial for the drug Tamoxifen, which I was to take for two years. At the end of that time, my consultant suggested that I should carry on with the drug for a further three years. However, last year I developed problems with my back and tests showed that the breast cancer had returned in my spine. This was treated by radiotherapy and I was taken off Tamoxifen and prescribed a different drug—Arimidex. At present I am being treated at the Cancer Research Centre at Weston Park Hospital in Sheffield with bone-strengthening drugs to try and prevent further spread.

  1.  As a patient, I have become very interested in cancer research and had not realised, prior to my illness, just how many different research charities there are and how many different bits of research there seems to be taking place. I feel there could be great benefits by bringing all these under one umbrella, both from the research point of view and also from the fund-raising side. I would like to share the concern of many women that cancer research appears to be very fragmented—many people doing their own thing in different places—and the need for a more co-ordinated and well-publicised approach. However, I was actively involved in

setting up The Sheffield Breast Cancer Research Fund as a way of enabling breast cancer patients in Sheffield to donate to local research. Many women want to feel that they are helping other women in their own locality and to give something back for the usually excellent cancer services we have in Sheffield.

  2.  I am also a patient representative on the North Trent Cancer Network, Culyer Funding Team looking at various aspects of research and am very interested in research into the psychological impact of breast cancer. There seems to have been many research projects looking at the clinical aspects of cancer treatment and the effectiveness of clinical trials, but I am not aware of much research into the psychological treatment of cancer. My own experience was that this aspect of care was sadly lacking and eventually I suffered a period of deep depression requiring hospital care. Basic counselling, where I could have expressed my hidden fears, was never offered and I continued pretending everything was all right for nearly a year after my original diagnosis.

    I would welcome more research into the emotional effects of being diagnosed with cancer in today's society as I feel cancer research should cover all aspects and not just the medical side, which is usually put forward by drug companies and not users/patients.

  3.  Regarding clinical trials, in retrospect I am very glad that I was drawn to take Tamoxifen, as my consultant has assured me that the cancer would have returned earlier if I had not been on that treatment. This shows the dilemma for patients dealing with life or death issues in their lives being asked to make well-informed and unbiased choices in their treatments. Many people offered something that may or may not help them will, I think, opt to give it a try whereas others will stick with the tried and tested methods of treatment. Sometimes it is a choice between taking a drug or not and unfortunately the financial costs can enter the equation. I had always assumed that when taking part in clinical trials, the drugs would be provided free of charge, however this is not the case and may be a factor influencing people's choice.

June 2000