Teens, young adults in UK ‘forgotten’ in cancer research, treatment

LONDON — After six months of misdiagnosis, Stephen was eventually told he had bowel cancer. He was 15.

A straight-A student, he had always wanted to be a doctor. Now 18, he said: “I’ve lost faith in the healthcare system.” He visited his general practitioner numerous times with “crippling symptoms” and went to the A&E on five occasions.

“I have a strong family history of bowel cancer. At one point, we asked the doctor if I might have cancer and demanded further scans. He said, ‘No, definitely not, you’re too young’.”

Over the past three decades, cancer survival rates have increased dramatically. However, for teenagers and those in their 20s, the outlook is less promising — several reports have shown that improvements in outcomes for them do not match those among children and older adults.

To investigate this, the National Institute for Health Research in the United Kingdom has launched Brightlight — a cohort study that hopes to become the largest of young cancer patients aged 13 to 24. It intends to recruit more than 2,000 people by April. In earlier studies, two of its leaders — Professor Jeremy Whelan, a specialist in teenage oncology at University College London Hospital, and Dr Lorna Fern of the National Cancer Research Institute — found that one of the critical factors for the “survival deficit” is delayed diagnosis or misdiagnosis.

Invariably, this leads to a poorer prognosis as the more advanced the cancer is, the harder it is to treat.

More than a third of participants at a recent Teenage Cancer Trust (TCT) conference, the aptly named Find Your Sense of Tumour, were diagnosed only on emergency.

Among many young patients, there is overwhelming resentment of GPs — a sense that they were not taken seriously and their symptoms dismissed as adolescent fatigue, stress or persistent hangovers.

It is true cancer is rare among young people, but it is also the leading medical cause of non-accidental death among them. The TCT said that, in the past 30 years, cancer among teens and young adults has risen by 50 per cent — for the first time, teenage cancer cases outnumber those of children. Young people are also known to contract the most aggressive forms, exacerbated by their growth spurts.

Greater awareness is needed to enable GPs to spot the “alarm-bell” symptoms. Since younger patients tend to develop the rarer forms of cancer — leukaemia, lymphomas, sarcomas, germ-cell tumours and cancers of the central nervous system — there is an urgent need for more research to group the specific symptoms of these malignancies.

At the moment, teenagers and young adults are seriously under-represented in clinical trials. In a 2008 study, Prof Whelan and Dr Fern found that almost half of patients aged 10 to 14 participated in a trial, but the proportion fell to 25.2 per cent for 15- to 19-year-olds and only 13.1 per cent for those aged 20 to 24. For too long, they argued, clinical and research communities have failed to recognise teens and young adults as a distinct category with unique biologies and they have been left “forgotten in the middle”.

It is the same story when it comes to hospital care — teens and young adults have been identified as a “lost tribe”, caught between paediatric services and those designed for older patients. The National Cancer Reform Strategy (2007) estimated that 70 per cent were not treated in age-appropriate settings — many were left in children’s wards with the disturbance of crying babies, or isolated in bays with elderly patients and surrounded by constant bereavement. The Guardian