London, UK: Three studies to be presented at Teenage Cancer Trust's Fifth International Conference on Teenage and Young Adult Cancer Medicine today (Monday) have thrown light on the extent of delays that teenagers and young adults (TYAs) can face before being diagnosed with cancer, and on some of the reasons why this happens.
Tim Eden, Teenage Cancer Trust Professor of TYA Cancer at the University of Manchester, UK, will tell the conference that in a study of 115 patients with bone tumours, the time between the first symptom and a diagnosis (the symptom interval) ranged from four to 184 weeks with the average time being 15.2 weeks. A second study looked at 95 patients with a variety of tumours and found that the symptom interval ranged from two to 192 weeks with the average length being 9.5 weeks. The symptom interval is made up of the time it takes a young person to seek help and the delay by health professionals in recognising symptoms that require referral and prompt diagnosis.
A third study to be reported to the conference by Ms Sam Smith, a TYA Nurse Consultant in the Teenage Cancer Trust Unit at the Christie Hospital (Manchester, UK), shows that out of 207 young people with cancer who took part in an interactive survey, four out five sought medical help very quickly and only seven per cent delayed for a matter of months. Approximately half of the patients with Hodgkin lymphoma, brain and bone cancers had to visit their general practitioner (GP) four or more times before they were referred to a specialist.
Prof Eden said: "It would appear that when we compare these data with studies of children with cancer, teenagers and young adults do face greater delays in diagnosis, particularly for bone and brain tumours and Hodgkin lymphoma. In our studies the professional interval has always been longer than patient symptom interval. There appears to be delay at primary, secondary and tertiary care levels. Interventions are being explored, both to educate the public, and young people in particular, to seek help for worrying symptoms and to empower them to push for referral to specialists. However, it would seem to be more important to raise awareness amongst professionals to recognise worrying signs and to trigger them to be more rapid in their response; in addition, they need to ensure simple and rapid referral pathways for investigation and subsequent treatment. Whether this will improve survival remains unclear but it will reduce anxiety, anger and distrust of doctors."
He added that from most of the research in this field it was difficult to conclude whether delays in diagnosis did definitely result in worse outcome for TYAs. "There has been an improvement in survival for teenagers and young adults who develop cancer but it has not been so dramatic as seen in children. It is important to realise that there are other potential reasons for delays in diagnosis, including the particular mix of tumour types seen in this age group, with more resistant forms of cancer, and treatments not yet fully adapted to the tumour biology."
In the study of bone tumour patients, Prof Eden said: "The delay was longer if the patient was over 12 years at presentation and if they went to their GP first, rather than going to a hospital accident and emergency department. X-rays were more likely to be taken in A&E at once." Delays also varied depending on the type and site of the tumour.
In the second study looking at all tumour types, the symptom interval varied depending on tumour type, with the shortest wait being seen in those with leukaemia (an average of 4.5 weeks) and the longest for bone tumours (an average of 23 weeks).
Ms Smith will report an analysis of responses from 207 young people with cancer who attended the annual Teenage Cancer Trust "Find your sense of tumour" conference in 2007. Eighty per cent reported that they had gone to their GP within four weeks of noticing pain, a lump or swelling, weight loss or tiredness. Almost all of them had two or three of these symptoms. Of the one in five who delayed seeking help, most (63%) said that either they or their parents had felt that the symptoms weren't serious; a small number had been too embarrassed or scared to seek help.
"If young people are reporting to their GP with what are recognised as being pretty classic cancer symptoms, cancer should be considered the first possibility and not the last resort," said Ms Smith. "However, following the first onset of symptoms many young people reported numerous visits to their GP before being referred to a specialist and many waited several months for this referral to take place. Our findings do show that age is a factor in the number of GP visits, with the older age group reporting more visits before being referred.
"The minority of patients who did delay seeking help sometimes waited for several months. Of that small group, about 60% had Hodgkin lymphoma, which normally presents slowly with increasing swelling most commonly in the neck, but it can be elsewhere in the body."
Leukaemia was the quickest of the cancers to be referred to a specialist, probably because it usually presents with a number of acute signs and symptoms. "However, it is of great concern that some of the commonest cancers at this age – Hodgkin lymphoma, brain and bone cancers – were the slowest to be referred to a specialist. For example, 54% of patients with Hodgkin lymphoma, 59% with brain tumours and 46% with bone tumours visited their GP four or more times with symptoms before referral," said Ms Smith.
Prof Eden said: "A small number of patients may delay in seeking help and we can improve education about health and the meaning of symptoms for the public, but the biggest challenge seems to be to overcome delays by professionals. We need to assist professionals in: recognising signs and symptoms as being potentially serious; referring patients in a timely fashion to appropriate experts; but above all, considering the possibility of cancer in this age range. Cancer is, after all, the most common disease causing death in the 15-24 age range, accounting for 11% of all deaths."
Prof Eden and Ms Smith say that a group of colleagues working together are planning educational programmes about health and cancer symptoms for young people through Teenage Cancer Trust. They are also investigating why rare but serious symptoms and signs do not trigger a rapid response by professionals within the health service.
Note: please see the press release on Sam Smith's case study of a 20-year-old who waited ten months before being diagnosed and starting treatment.