THE BLOG

Teenage Cancer and Diagnosis Rates: What's Taking So Long?

24/09/2014 10:37 BST | Updated 20/11/2014 10:59 GMT

'In the crusade to improve cancer diagnosis rates in young people, to what extent should the emphasis be on public awareness?' Photograph: Thirteen of Clubs Creative Commons Creative Commons Attribution-Share Alike 2.0 Generic License

It's the kind of headline the Daily Mail would sell the kidneys of its extended family for: 'doctors misdiagnose teenager with cough for nearly TWO years before discovering cancerous tumour is STRANGLING her'. Yet for young people exhibiting potential signs of cancer - including my 16-year-old sister, diagnosed with advanced stage Hodgkin's Lymphoma almost two years after first presenting symptoms to her GP - this sort of tabloid sensationalism isn't far off the mark.

Medical opinion is that the earlier the diagnosis, the better your chances. And it's with this in mind that Teenage Cancer Action Week returns this week in its annual bid to raise awareness of the most common signs of cancer in 13-24 year olds. The idea is that an informed public will be more likely to push for diagnosis if they suspect their symptoms correspond to those of cancer.

Undoubtedly, improved public understanding of the disease is beneficial. Although cancer is rare and unexpected in teenagers and young adults, the odds are stacked against them. In the UK, where survival rates lag significantly behind the rest of Europe and 46% of cancers are diagnosed at an advanced stage, cancer is the leading cause of death from disease in this age group. What's more, young adults are at the bottom of the pile when it comes to diagnosis rates: Teenage Cancer Trust reports that around half of all young people with cancer visit their GP at least three times before referral for further tests, an indicator of a poorer care experience according to the Department of Health. The figure is double that of late referrals in adults. But, in the crusade to improve diagnosis rates, should the emphasis really be on public awareness?

The C-word is already the disease we're most scared of, and the one we (think we) know most about. Just take any hypochondriac you know, and how many times per month they self-diagnose with a terminal illness. Cancer symptoms are vague and unspecific in young people (the top culprits are persistent and unexplained pain, lumps, bumps or swelling; significant weight loss; extreme tiredness; changes in a mole). Already-pressurised GP surgeries do not need to be swamped with even more valetudinarians insisting their sore throat is oesophageal cancer.

The main problem with late diagnosis isn't that people are hiding their symptoms under a bushel - and frankly, NHS strategy should not be he who shouts the loudest gets the better prognosis anyway - but that GPs are sending them away. My sister was repeatedly sent home with a persistent hacking cough, swollen lymph nodes, back pain, night sweats, breathlessness, exhaustion and dramatic weight loss. It was only when she started coughing up blood on the morning of her first AS exam that a GP paid attention.

In fact, the common experience amongst young patients and their families is that they have to fight to be taken seriously by primary health practitioners. In Scotland, half of young people with cancer are only referred after 4+ visits. Teenage Cancer Trust reports that, country-wide, 16.5% of young adult cancer patients who are not referred to a cancer specialist are misdiagnosed with common infections, 10% are asked to come back if symptoms persist (often within two to six weeks, but sometimes within three to six months) and another 10% are told that there is nothing to worry about. The reassurance sometimes comes explicitly: 'it's not cancer'.

Yes, we could shout louder, but patients are not professionals. If my doctor dismisses persistent symptoms, I assume that, on account of their many years of clinical experience, they're probably better qualified to assess whether or not my headache is life-threatening. I don't have the confidence to insist, and am afraid of being rude, or worse, receiving short shrift. Practitioners know that cancer in young adults is rare - GPs are likely to come across maybe one case every twenty years - and I know I'd be galled by patients leaping to cancer as their first conclusion. In an era that has seen doctors forced to swallow the combined pill of internet access and patient-centred care, it is worth remembering that Dr Google does not have a medical degree, and nor do you.

So how can improvements be made? Research emphasises the importance of continuity of care: a doctor who knows you and your medical history is in a better position to spot recurring problems and make informed decisions. Best practice involves GPs reviewing a patient's medical notes and keeping these accurate, checking in about previous symptoms even if the patient is attending for another reason, and undertaking thorough clinical examinations. These simple measures were not always taken in my sister's case, and could have highlighted the problem months sooner.

Longer consultation times would also help, but this is perhaps not the most realistic option for an already squeezed NHS. The same goes for automatically referring patients with potential cancer symptoms 'just in case'. Safety-netting (i.e. contingency plans for if the problem doesn't go away, which in practice usually means arranging a follow-up appointment) is, however, a technique already employed by GPs that could be implemented more rigorously. Teenage Cancer Trust advocates a three-strike approach whereby if a problem persists for more than three consultations, GPs will refer young people for further tests anyway: if I go back to my doctor three times with my pesky headache, the risk of cancer rises from 1 in 1,500 to 1 in 900. Practitioners rather than patients could schedule follow-up consultations if symptoms persist, particularly in the case of younger people who may be less confident or reliable in taking responsibility for their health.

Admittedly, a public campaign is more visible to the layman like me than the work being done behind the scenes, and I'll happily learn my cancer facts to keep me and those I know that little bit safer. Denigrating GPs is certainly not the way to go about solving a multifarious problem, but in the diagnostic chain from self-appraising patient to treatment, they are currently the weakest link capable of making a medically-informed evaluation, and therefore surely where the emphasis for improving diagnoses should ultimately lie.