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Prognosis for teenagers and young people with cancer fails to improve
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     London

    More teenagers and young people are getting cancer than ever before, said specialists and campaigners this week. But they are no more likely to survive their illness than they were 25 years ago because teenage cancer has been largely ignored by researchers, health service planners, and the government.

    New data show that, although cancer among 13 to 24 year olds is still rare, it has been increasing by an average of 1.2% every year since 1979 and now exceeds the cancer rate in younger children.

    An estimated 2000 people in this age group develop cancer every year, although the exact incidence and prevalence is difficult to pin down because of the way official statistics are collected.

    Myrna Whiteson, chairwoman of the Teenage Cancer Trust, said at the trust's third international conference on cancer and the adolescent, that teenagers and young adults had been "defined out of existence" as well as neglected and ignored by the government and the NHS.

    Several reasons explain why the outlook for cancer patients in this age group has remained unchanged for so long, said Professor Archie Bleyer from the University of Texas in Houston. Young people aged 13-24 are often not considered by doctors to be at risk of cancer and are consequently diagnosed late, he said. In addition, few specialist services exist for this age group, and less than 1% of patients take part in clinical trials, compared with some 60-70% of younger children who get cancer.

    Kelly Denver, who was treated for non-Hodgkin's lymphoma on an adult ward, said it was a very isolating experience

    MARK THOMAS

    The new figures show that the rate of cancer among 13 to 24 year olds has risen from 15.4 per 100 000 to 19.8 per 100 000 in the 21 years between 1979 and 2000. The biggest increase is among 20-24 year olds, particularly in lymphoma, melanoma, and germ cell tumours, including testicular germ cell tumours.

    Whereas teenagers and young adults who get cancer today are no more likely to survive than they were 25 years ago, five year survival in younger children has risen by 39-46%.

    The Teenage Cancer Trust is calling for urgent action from the government to support its work in building special cancer facilities for teenagers and young people and promoting more research and better monitoring of cancer in this age group.

    Mrs Whiteson welcomed the move by the National Institute for Clinical Excellence to extend its forthcoming guidelines on treating cancer in children to include adolescents, which are due out next February. But she complained that progress was not fast enough.

    "Is the government going to sit on its hands and watch while young cancer patients fall behind in the cancer lottery? There may have been some recent improvements in overall cancer death rates but not necessarily for the group with whom we are concerned," she said.

    "The government must ask the national cancer director to insist that health trusts say what provision they make for this age group and stipulate that trusts meet their responsibilities. The government must also use its power to compel the pharmaceutical industry to develop trials for young cancer patients."

    The trust announced that it would fund the world's first chair in adolescent cancer from June and commit £250 000 ($467 000; 375 358) a year over the next decade into research and treatment.

    Kelly Denver, who was diagnosed with non-Hodgkin's lymphoma three years ago when she was 18, said that being treated on an adult ward was a very isolating experience for both her and her family. "I felt like a freak. No one on my ward was having the treatment I was, and I couldn't speak to anyone about it," she said.

    When she was treated at the Teenage Cancer Trust's unit at Weston Park Hospital in Sheffield for the final three months of her treatment she said her experience was completely different. "My friends and sister were happy to visit me there, and the difference was amazing. My parents could speak to other parents in their position and so could I and the nurses had more time to talk to me," said Ms Denver.

    Mr Robert Grimer, a consultant orthopaedic oncologist at the Royal Orthopaedic Hospital NHS Trust in Birmingham, called for new treatments and more research into osteosarcoma, the third most common cancer in young people.(Zosia Kmietowicz)