Diagnosing cancer - what's the delay?

Wendi Snart, Paediatric Oncology Outreach Nurse, in Oxford, reports on the findings of a research project into delayed diagnosis. 

As part of some recent course work, I interviewed a mother (I will call Alison) of a boy who had completed 3 years of treatment for acute lymphoblastic leukaemia. I asked Alison to tell me about the time before her son was diagnosed. Prior to the diagnosis, her son had been seen over a few weeks by a number of different healthcare professionals and it emerged during the interview that Alison believed her son could have been diagnosed and started treatment earlier.

The time before diagnosis can be a very significant time for families. A delay in diagnosis may affect how a parent adapts to diagnosis and treatment and may result in ongoing concerns about the long term future of their child. In addition, if there has been a delay in getting a diagnosis of childhood cancer, this may result in disputes with general practitioners (GPs), which can potentially be very distressing for parents to deal with and ultimately can have a negative impact on the ongoing relationship with the primary healthcare team. 

Childhood cancer can be very difficult to diagnose with presenting symptoms that are often vague and non-specific, but can potentially have innocent explanations. The quick diagnosis and treatment of cancer is a government priority. According to Department of Health referral guidelines, children in whom cancer is suspected by their GP can expect to be seen within two weeks by a paediatric haematologist or oncologist(1).However, for such a referral to occur, GPs need to be able to recognise the often subtle signs of childhood cancer.




The NICE Guidance(2) suggests that, on average, a GP will see a child under 15 years with cancer only once every 20 years. Feltbower et al(3) looked at the incidence of childhood cancer per PCT (primary care team) in England and Wales, and found on average only 3 to 5 children under 15 years diagnosed with childhood cancer each year for every PCT. This highlights the difficulty for any GP faced with the problem of correctly diagnosing and referring a patient when potentially it could be 20 years between similar consultations.

“Parents have unique knowledge of their child and their intuition can tell them that ‘something is wrong’.”

In the 15-24 age range, the symptoms of cancer can also be vague and not very specific. In addition, young people can be reluctant to seek medical advice for various reasons, which may result in a delayed diagnosis. Many symptoms of childhood cancer are very similar to those of less sinister diseases and there is little evidence to
show that children with cancer are easily distinguished from those children with similar symptoms who don’t have cancer. General practitioners make a rapid global assessment of a child’s state of health. They are searching for the presence or absence of specific signs and symptoms. At times, the focus of assessment during
a consultation is clinical signs and symptoms, and very little emphasis on subtle abnormalities such as changes in behaviour or academic performance.
Parents however, recognise illness largely through behavioural change. Parents have unique knowledge of their child and their intuition can tell them that ‘something is wrong’. However, professionals often discount this intuitive knowledge. It is vital for GPs and other health care professionals to consider and recognise the opinions of parents when taking into account the possible seriousness of a condition.