Young adults with cancer are a ‘lost tribe’ who need dedicated research into their treatment and specialist care, a Sutton researcher has claimed.

People diagnosed with certain types of cancer in their late teens or early twenties often do worse than those treated for the same disease as children.

Professor Winette van der Graaf, of The Institute of Cancer Research, helps young people diagnosed with sarcoma, a type of cancer affecting the bone and soft tissues.

In one form of sarcoma, rhabdomyosarcoma, around 70 per cent of children aged 0 to 14 years old survive longer than five years but less than 40 per cent of those aged 15 to 19 survive for that long.

Sarcomas account for eight to 10 per cent of childhood cancers and one to two per cent of adult ones.

Adolescents and young adults suffering from sarcoma can have their personal lives stagnated because of the disease, according to research.

Sutton-based scientist and oncologist Professor van der Graaf said: “These young people are at a key developmental phase in their lives, they’re taking important exams, going off to university or starting their first job and then all of a sudden they’re confronted with a life-threatening disease.

“While their siblings and friends learn how to live independently, young people with cancer can often be held back by the aggressive treatments they receive and the psychological impact of fighting their cancer.”

Professor van der Graaf is studying how to improve outcomes for young adults with sarcomas.

She believes their age is a factor in their condition.

“As we get older, the chromosomes where our genetic information is packaged up can become more unstable and this can make cancer harder to treat.

“This may partially explain why young children with certain sarcomas do slightly better than young adults. But we do not yet know for certain how age affects cancer prognosis in sarcoma,” she explained.

Specialist programmes for care and research are required for young adults with cancer, Professor Van der Graaf noted.

Such programmes are already in place for children.

She said: “These patients experience their own age-specific issues such as relationships, education, housing, employment, young families and so on.

“These issues need to be recognised during treatment. This could help young people stick to their treatment better, come back on track sooner and improve their experience.”

A programme for young adults would improve cancer research and would also assist with their treatment and experience, according to Professor van der Graaf.

She added: “We need to do a lot more research into the biology of why these cancers affect young adults so badly.”

Professor van der Graaf also said that work is underway at the ICR and The Royal Marsden hospital to examine how such changes to healthcare could be implemented.