Embargo: 00.01 hrs CEST Tuesday 22 September 2009

Case study linked to study on teen and young adult experiences with cancer

Jay Wheeler, 17, of Ruislip, Middlesex, UK*

Jay was 14 (around June 2006) when he started to get bad headaches regularly and became increasingly forgetful. Between September and December 2006 he was given 52 detentions because, every time he was given a detention slip for his mum to sign he would forget to give it to her and earn himself another detention.

Jay’s mum, Julia Miller, was becoming worried about him and, although his teachers felt he was being a difficult teenager, she thought there was more to it. In November 2006, she took Jay to the GP who said stress headaches and migraines were causing Jay’s symptoms. His mum then took him to an optician to check his eyes. He was told his eyes were fine.

Around Christmas, Jay started getting pains in his arms and neck that were causing him to stoop. Julia took him again to the GP, who used acupuncture, which did nothing to relieve Jay’s symptoms.

In total, Jay went to his GP five times and was referred to a neurologist only after his mum insisted. However, he was told that at 14 he was too young to be seen by a neurologist on the National Health Service. He went back to his GP, who referred him to a private neurologist. He was turned down by the private neurologist’s office, who also said he was too young to be seen.

Eventually he saw a paediatrician on the NHS on 9 February 2007. The doctor was immediately suspicious and sent him that day for a CT scan. Immediately after the scan, the paediatrician arranged for him to be rushed by ambulance to London’s Great Ormond Street Hospital for emergency surgery on the tumour, which was confirmed as a desmoplastic medulloblastoma. Because the tumour was so advanced there was no time to wait for MRI results so effectively they had to go in ‘blind’.

This meant that the rest of Jay’s treatment was very severe. He underwent six weeks of radiotherapy and 18 months of intensive chemotherapy every six weeks. The doctors don’t know for certain whether the delayed diagnosis had an effect on the size of the tumour but feel that it certainly meant that his treatment was much more drastic.

His treatment affected his mobility and resulted in impaired hearing, sickness, fatigue, hair loss and significant weight loss. He also had fluid on the brain and has a coil fitted. His treatment has also affected his short-term memory, making it hard for him to study. He was only able to do one GCSE because of his cancer treatment and is now studying in the 6^th form. He sees a psychologist regularly and is being treated for hypothyroidism, caused by the radiotherapy.

The consequences of Jay’s delayed diagnosis are that he feels let down by his GP and resentful that he had to suffer so much before he received treatment. He and his mum constantly wonder whether he would have suffered less had he been diagnosed earlier and had less drastic treatment.

Jay feels his symptoms weren’t taken seriously and that he was treated like a disobedient and difficult teenager. The intensive treatment he received affected his ability to study and so he feels isolated from his peers. He has drifted apart from close friends (especially boys), who didn’t know how to react to him when he was going through his treatment.

* Jay, who was not a participant in the main study, is a spokesperson for the UK’s Teenage Cancer Trust. If you would like to interview him, please contact Stephanie Westacott at the Teenage Cancer Trust on tel: +44 20 7612 0714 or mobile: +44 7968 150 675.