Stephen Sutton's father backs calls for better diagnosis for young with bowel cancer

Expert doctors in the field say people in that age group are at higher risk of getting the illness.

Their campaign is focused on Lynch Syndrome, an inherited condition which means that people have a 72 per cent higher risk of developing bowel cancer during their lifetime.

It coincides with the six-month anniversary of 19-year-old Stephen's death, following his courageous work raising more than £5 million for the Teenage Cancer Trust.

His father was himself diagnosed twice, in 1989 at the age of 31 and in 2009, but it was only second time round that he was tested for Lynch Syndrome.

"Since then, I've discovered that because of my Lynch Syndrome diagnosis, I should be having a colonoscopy every two years," he said. "Yet this has been difficult to organise and I am still only being offered it every three years."

"If I had been genetically tested after the first diagnosis and given regular surveillance screening, it might have been possible to have prevented bowel cancer developing second time around, which would have been welcome as the second diagnosis was a terrible shock and the treatment much harder than first time."

Research into his family's medical history showed that bowel cancer has struck in at least four generations. His maternal grandfather died at 31 of bowel cancer. While his mother survived bowel cancer in her early 40s, but died aged 53 after a five-year battle against leukaemia. Then his son Stephen also had bowel cancer.

"I noticed Stephen wasn't well when he was 15 and when as his symptoms continued, he must have gone to the doctors about five times and the hospital on three or four occasions. We kept telling them about my Lynch diagnosis - everyone thought that Stephen was too young to get bowel cancer."

More than 1,000 cases of bowel cancer a year that are attributed to Lynch syndrome, many under the age of 50, but in the UK, fewer than five per cent of families with the syndrome have been identified.

Chief executive of Bowel Cancer UK Deborah Alsina said: "Andy's family highlights in a tragic way the crucial importance of ruling out bowel cancer first not last in a family with Lynch syndrome. It also highlights the vital importance of genetic testing at diagnosis and the need for regular surveillance screening.

Other groups that should be in a surveillance screening programme include people with a strong family history or those who have had an inflammatory bowel condition for over ten years."

A recent health economics study found that Lynch testing at diagnosis for everyone under 50 with bowel cancer would be cost effective enough to have been approved by the National Institute for Health and Care Excellence (NICE).