Originally published in September 2003 icon
With a catchy abbreviation that sounds like a cross between a fast-food chicken outlet and a fashion chain, KCUK (Kidney Cancer UK) is easy to remember. But, even though the incidence of kidney cancer in the UK has risen by a startling 68 per cent over the last 20 years, awareness of the disease is still low - even among some medical professionals.
"There are two major problems with kidney cancer," says KCUK's co-founder Keith Taylor. "Late diagnosis, and the fact that kidney cancer does not respond well to conventional cancer treatments. Therefore more research is needed into innovative approaches, especially immunotherapy."
Keith went to see several GP's, over a period of four years, with persistent physical symptoms, but wasn't given any investigative tests for cancer. "By the time I was diagnosed, after blood loss in my urine, a tumour of about 7cms in diameter was discovered on my left kidney, and I was also found to have a large number of lung metastases."
His experience is fairly typical of kidney cancer patients. "I didn't know where to turn for help. I wasn't given any information or contact numbers for other patients or support groups but, being the sort of person I am, I knew I'd learn a lot more about the disease and treatments by using the internet rather than going to my local hospital." Despite a poor prognosis, Keith has continued to seek the best medical advice. He now feels very fortunate to have remained fit for five years since diagnosis.
Keith and fellow kidney cancer patient Dick Williams, set up KCUK in January 2000, as the country's first support organisation for kidney cancer patients and carers. It aims to provide reliable, up-to-date information about the disease and its treatment, to bring patients and carers together to share their experiences and to raise public awareness (they were behind the first Kidney Cancer awareness week, held in September 2002).
KCUK is run by and for those with direct experience of the disease, and the charity also co-operates with the medical profession to improve standards of care and promote research. Keith is now a member of the consumer liaison group of the National Cancer Research Institute, and the patient's representative on the NCRI's renal cancer clinical studies group.
If the comprehensive and easy-to-follow KCUK Fact Pack doesn't answer all your queries or address your concerns, you can visit KCUK's awardwinning website to join in discussion forums and compare thoughts and problems with people around the country in the Sunday evening chat room from 8-9pm. More advice is available for both patients and carers from the telephone helpline, and there is a free newsletter and quarterly magazine.
ITV news presenter Nicholas Owen made headlines himself when he was diagnosed with kidney cancer.
Watch out for new initiatives and events throughout the country from November 3, when KCUK launches its 2003 awareness campaign.
If you have an idea for a suitable fundraising activity, or can offer any other kind of practical help, please call 01536 741391.
For confidential advice and support call the helpline on 024 7647 4993 between 930am and 9pm (Monday to Sunday). Website: www.kcuk.org.