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When faced with a diagnosis of kidney cancer, any individual will naturally think of numerous questions concerning the nature of the disease and its likely future course (prognosis), treatment options, where to obtain the best medical advice, how to seek psychological and emotional support, and what to do when serious financial and other practical problems arise within the home or at work. In practice, many kidney cancer patients in the UK find that it is very difficult to get answers to these questions. There is relatively little published information about kidney cancer in this country, and until KCUK was established, there was no support organisation of any kind for kidney cancer patients and their carers. Furthermore, many patients never see an experienced oncologist specialising in kidney cancer. One reason for this is that kidney cancer is one of the less common forms of cancer (although its incidence is increasing and accounts for about 6,000 new cases per year) and there are few genuine experts with a comprehensive knowledge of the disease and its treatment working in UK hospitals. In addition, some of the most innovative treatments for kidney cancer are not widely available in the UK, and therefore patients are faced with the further challenge of finding out about medical developments in other countries. |
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Sometimes kidney cancer patients see two or more doctors for opinions about treatment for their disease, and they become confused because the doctors disagree. Increasingly, patients are also seeking advice from doctors in other countries and discovering that there are significant international variations in treatment protocols. In addition, more and more UK patients are becoming interested in alternative and complementary approaches to cancer, but they can find little information about such approaches within the National Health Service. Our new Fact Pack ('Living with Kidney Cancer') was launched officially in our first Kidney Cancer Awareness Week (23 to 29 September 2002). This booklet provides comprehensive information about kidney cancer, its diagnosis and treatment, and positive suggestions for living with the disease. For further details telephone 01889565801. |
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KCUK therefore seeks to make the most reliable information about kidney cancer available to patients and carers in the UK, and to encourage informed debate. We suggest that you turn first of all to our Frequently Asked Questions page. Here we respond to the most common questions asked by kidney cancer patients and carers. For further, more detailed information we provide Links to the best kidney cancer web sites. You will also find articles about various aspects of kidney cancer in our quarterly magazine; and educational lectures, meetings and conferences are publicised on our Events page. For the 2003-4 awareness campaign (10 November onwards) we produced a new leaflet, 20 questions for kidney cancer patients to discuss with their doctor. Copies are available free of charge from KCUK. We respect the right of all kidney cancer patients to participate fully, in close co-operation with their doctors, in decision making about their medical care and the treatment of the disease. To this end, while respecting the professional knowledge and skills of doctors, we believe that it is essential to equip patients and their carers with reliable information so that they can understand what their doctors tell them, ask the right questions, and make informed treatment choices. In some cases patients may indeed know more than their doctors about recent developments in kidney cancer research and treatment. They certainly know more about the experience of living with kidney cancer and the effects of treatment on themselves. We believe that the ideal situation is that in which the doctor and the patient share information and knowledge, and in which each listens to, and learns from, the other. |
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