Young People Living with Cancer: Implications for Policy and Practice

2. Diagnosis

We began this chapter with reference to Lewis (2005) and Whiteson (2005) who both refer to a lack of evidence to support their strong suspicions that late diagnosis and delays are a particular problem in young adult cancers. Yet it seems from the evidence presented here that there are indeed certain age specific barriers which make the early presentation and diagnosis of symptoms less likely and are closely related to Whiteson’s list of contributory factors. As such delays can contribute to poor outcomes and this is indeed a serious issue.

Young adulthood is a life stage that brings with it a separation from dependency on parents in many ways. This includes an understandable tendency to be private over health related issues. This may be the case particularly if symptoms relate to parts of the body about which young people feel uncomfortable discussing with a parent, for example testicular or breast lumps or gynaecological symptoms. While breast cancer may be rare in this age group, the link between sexually transmitted infections and carcinoma of the cervix and uterus makes these cancers relatively frequent (Birch et al 2003). And according to Selby et al (2005) the incidence of testicular cancer is increasing.

Additionally, the young person may not have the knowledge to recognise early symptoms as being potentially serious or life threatening and as a result will delay seeking advice; this can be exacerbated by the fact that they do not wish their plans to be disrupted. We can see in Gemma’s case that she did not take her symptoms seriously nor was she willing to allow them to disrupt her plans to go on holiday or get on with building her career. Clearly it is not only young adults who delay seeking advice (Smith et al 2005) – to make such an assumption would be to idealise the health related behaviour of older adults while pathologising that of the younger adults. However, in older adults the delay may result from a fear of cancer, while amongst the younger age group the possibility of cancer is less likely to be recognised – indeed we have seen examples of the disbelief that can result from the diagnosis.

So even when advice has been sought, the diagnosis may be rejected as in Emma’s example or the implications may not be clear. Given the likelihood of a parent not being present at an initial consultation this can result in a situation where, as in Steven’s case, he had no clear understanding of the meaning of the diagnosis. In general, being accompanied by a supporter can be helpful to any consultation where a diagnosis of serious illness may be made, and such support may be more likely with either much younger or much older patients who take a parent, partner or friend with them.

However, the majority of the delays were caused not by a lack of willingness to seek medical advice, but by reassurance from a professional – too readily accepted – that the symptoms were not serious. It seems that Engel’s (2005) observation that the medical assumption of the ‘bird being a sparrow rather than a lanceolated warbler’ has been borne out in many of the accounts presented above. Many GPs will not have seen a case in their surgery, so when vague or imprecise symptoms are presented that can be interpreted as muscle strain, a sports injury or simply tiredness due to too many late nights and partying; this seems a much more likely diagnosis. Indeed it is a much more likely diagnosis in the majority of cases and as a result it may even seem alarmist for a GP presented with such symptoms to assume a more serious cause and worry the young person unduly by ordering what may turn out to be unnecessary, distressing and expensive tests.

If cancer in teenagers and young adults is increasing (Birch 2005, Selby et al 2005, Thomas et al 2006) it is important to raise awareness among all those concerned in diagnosis and treatment. Education programmes on the issue for young people coupled with primary care practitioners having an enhanced awareness, that though still relatively rare, there are more cancers in the ages 15-24 than in children 0-15 (Albritton and Bleyer 2003, Birch et al 2003, Whiteson 2005) may combine to lead to earlier diagnoses. However, one of the challenges of achieving increased awareness is a need to balance this against causing alarm and subjecting young people to a battery of unnecessary tests for non serious illness. There are likely to be occasions when errors are made on both sides, but the application of the precautionary principle can be justified in such a potentially high risk scenario when failure to diagnose early enough can result in death. Health services at schools, universities, colleges and other establishments where there is a high concentration of young people may benefit from clear guidelines relating in particular to those cancers, such as osteosarcoma, found in the age group that may be hard to distinguish from routine conditions such as sporting injuries. A parallel raising of awareness amongst the young people may also be effective in encouraging them to seek medical advice at an earlier stage.

At a time when guidelines (NICE 2005a) for services for teenagers and young adults with cancer are a focus of policy making, these are issues that need to be recognised and embedded into any planning for future provision if teenagers and young adults with cancer are to stand the best chance of survival. Further implications for policy and practice are discussed in greater detail in Chapter Eight.

Key Points

Delays in diagnosis occur because of:

• primary care practitioners not looking for cancer in this age group
• symptoms being vague and ambiguous
• statistical likelihood of malignancy
• young adults’ lack of awareness
• young adults’ lack of motivation/willingness to seek medical advice
• young adults’ reluctance to accept a cancer diagnosis
• parents relinquishing responsibility for their son or daughter’s health

More rapid diagnosis is made when:

• more common cancers are presented
• young adult is informed and aware
• physician has dealt with similar cases
• symptoms are presented to a hospital A&E department