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Georgia Hillman

Georgia was diagnosed with Wilms’ tumour

One Sunday evening in 2008, after giving her one-year-old daughter a bath, Ruth Hillman noticed Georgia’s tummy felt firmer than usual.

Alarm bells began to ring.

By Wednesday, after seeing several different doctors, Ruth and her husband Ben were told Georgia had a tumour. Further tests showed that it was a Wilms’ tumour – a form of kidney cancer – and Georgia needed intensive treatment.

Georgia’s story is ultimately a happy one – she’s now a healthy five-year-old, and recently started school. Her treatment – surgery and chemotherapy – means she’s among some 33,000 people alive in the UK today who beat cancer in childhood. Although progress in some cancer types has been slow, overall survival rates are now at an all-time high.

But could they be even higher? In the end, Georgia was diagnosed in time, but others aren’t so fortunate. And, as in adults, cancer treatments in children are generally less effective when the disease is spotted late.

They’re also often more intense. As a result, survivors can have long-term disabilities – and with more lives being saved, this has meant an ever-greater focus on how we manage cancers in the youngest members of society.

The problem is that cancers in children are rare, and their symptoms are hard to tell apart from a whole range of more common problems. The average GP will only ever see a single case in their entire career – if at all. And for parents, they may never suspect that an ache or a pain could be something more sinister than childhood’s day-to-day rough and tumble.

In this blog post, we’ll take a look at the issues surrounding spotting cancers in children, and what’s going on to try to improve things.

Putting it in context

But first, some statistics. Each year, around 1,550 of this country’s 11 million children aged 0-14 are diagnosed with cancer – and that represents 0.5 per cent of the people diagnosed annually at any age.

Childhood cancer graphic - part 1: statistics

And as we mentioned above, survival rates are at an all-time high, and  almost three-quarters of children are cured of their cancer (although, as we heard in a previous post, being ‘cured’ can be just the start of a longer battle).

But partly because of the success against infections and other childhood health problems, cancers are now the biggest killers of the UK’s children – of the 1,400 children who die every year, of any cause, cancer claims about 240 of them – about a fifth of all deaths.

These are sobering stats, but numbers alone don’t tell the whole story.

When you also consider the huge impact cancer can have on the youngsters who survive and their families – birthday parties postponed due to hospital appointments; months or years of school missed; the long-term side effects of treatment; the years of life lost – it’s not hard to see why cancer in children is such an emotive and urgent issue.

Which cancers affect children?

People often talk about ‘childhood cancer’ as if it were a single, unified adversary. But in reality, scores of different types of cancer affect children – including some of the rarest forms of the disease.

Childhood cancer graphic - part 2: statistics

Leukaemias – usually fast-growing, acute varieties – make up about a third of cases. Next most common are brain tumours, which make up just over a quarter of cases, followed by lymphomas (11 per cent).

Accounting for about four or five per cent each are bone tumours and kidney tumours like the Wilms’ tumour that affected Georgia. And there are other rare forms of the disease like retinoblastoma, a cancer of the eye, or neuroblastoma, which develops from nerve cells.

This diversity means children’s symptoms are extremely wide-ranging, and can often mimic other more common problems.

“The problem for GPs and parents is that even worrying symptoms are fairly common, but cancers are extremely rare in children,” says Durham University’s Professor Greg Rubin, a former GP and the Royal College of GPs/Cancer Research UK clinical lead for cancer.

So what are the key symptoms of cancers in children?

What are the symptoms?

Pinning down the symptoms of childhood cancer is a tricky task, as Cancer Research UK’s head information nurse, Martin Ledwick, explains.

“One of the challenges is that the symptoms can be quite vague, and more often than not caused by something other than cancer.”

Childhood cancer graphic - part 3: symptoms

Like with all cancers, symptoms depend on the type of cancer, and where it is in the body, says Ledwick.

“One common symptom is tiredness and lethargy.  Also, if a child seems to be picking up a lot of infections, has flu-like symptoms, or is bleeding or bruising easily, this can be a sign that something‘s the matter and needs looking into,” he adds.

These are symptoms associated with leukaemias and lymphomas, but can be caused by other cancers too.

Unexplained aches and pains that persist can be a cause for concern,” says Ledwick.

Sometimes, like in Georgia Hillman’s case, parents first notice something’s the matter when they feel a lump or unusual firmness, which may not even have been causing any problems. “Just because a lump doesn’t hurt,” says Ledwick, “It doesn’t mean it’s not something to be concerned about – persistent lumps should always be shown to a doctor”.

“Sometimes, with bone tumours, the lump or swelling might be felt on an arm or leg. But other cancers that can affect children, like neuroblastoma, and kidney tumours such as Wilm’s tumours, can cause lumps in other parts of the body like the abdomen.”

Brain tumours can be particularly hard to diagnose. As well as causing headaches, seizures and coordination problems (ataxia), they can cause visual problems.

“Any sight disturbances, bulging eyes or other changes could be a sign that they have a brain tumour or eye tumour,” says Ledwick. But these symptoms can come and go, making it very hard for GPs to tell apart from more common illnesses.

Other cancers have much more distinctive symptoms. “Retinoblastoma - a rare eye cancer – can cause a squint, or the appearance of the pupil may change and start to look a bit like a cat’s eye when it’s reflecting light”. Sometimes this is first noticed in family photos, when a flash has reflected unusually in a child’s pupil.

But is there a checklist that parents could use?

“That’s the tricky thing. It’s difficult to come up with a definitive list of symptoms to look out for in your child,” he says. That’s because, as we’ve seen, most of these symptoms are extremely common in children. Knowing when to sound the alarm bell can be a challenge, even if you know what to look out for.

But even when they do spot tell-tale signs, parents of children with cancer often report difficulties getting their children diagnosed. A 2001 study in The Lancet conducted in-depth interviews with 20 parents of children with cancer. Half of them reported some degree of dispute or disagreement with doctors at some point during diagnosis.

The GP’s perspective

But from a GP’s point of view, things are just as challenging. Refer children too early, and you risk a lot of kids having potentially invasive and scary tests for no reason. Too late and it’s something that’ll haunt you for the rest of your life. “Missing a diagnosis of cancer is one of the things you fear most in your career,” says Rubin.

So how common, exactly, are these symptoms?

“Research into this has shown that if you take the average GP’s 20-year career, we’ll see about 12,000 young people in that time. In about 500 of these consultations, the patient will have a symptom of ‘oncological significance’ – in other words, something that alerts us to consider referring for further investigation for cancer. And in only one single case will it actually turn out to be cancer,” he says.

These stats come from a series of recent studies looking at the statistics of diagnosing children with cancer, that are changing our understanding, Rubin says, “but studying this is a relatively new field.”

What do the numbers say?

Child and nurse

Brain tumours are hard to diagnose

These studies paint a complex picture.

One headline stat comes from a study in the British Journal of Cancer in September 2012. This showed that around half of all children are diagnosed ‘as an emergency’ (either as an emergency referral by a GP, or at an Accident & Emergency department).

But most of these are cases of acute leukaemia – a disease that arrives incredibly, devastatingly quickly.

So this high proportion of emergencies is actually a sign that the system works – at least for these children.

A 2011 study examined 2,300 medical records of people aged 15-24 from three GP practices in Scotland. About 1,600 of them had visited their GP at least once during the year-long study period; 179 of them had symptoms that could have been cancer (mainly unexplained pain or fatigue, or lumps); and just two were subsequently diagnosed with tumours, which in both cases were benign.

Another study last year looked back over the GP records of nearly 1,300 children diagnosed with cancer in the UK, to look at their initial symptoms. This was compared to records of over 15,000 children without cancer. This allowed the researchers to calculate the chances of a particular symptom turning out to be cancer. The findings highlight the size of the challenge GPs face.

“Even worrying symptoms, such as pallor or a lump, only turn out to be cancer seven times out of 1,000. With something like a persistent headache, fewer than one in 1,000 children turns out to have cancer,” explains Rubin.

In other words, if you referred every one, you’d give brain scans to a thousand children with persistent headaches in order to pick up one brain tumour. That’d be a lot of tests, and a lot of time and money.

Dr Sophie Wilne is a paediatric oncologist in Nottingham, who frequently sees children with brain tumours. “Referring a child for a scan who doesn’t require one creates lots of unnecessary anxiety for families and young people,” she told us. Referring children who don’t need scans also has the knock-on effect of increasing waiting times – meaning that it can take longer for a child who really needs a scan to get one.

Brain tumours are particularly tricky

Headsmart leaflet

The Headsmart brain tumour campaign

Brain tumours are particularly difficult to diagnose – and early diagnosis really does make a difference to long-term side effects and survival.

Currently, sixty per cent of children who survive are left with some form of disability. “Most of the children I treat are cured. But the earlier I can get to them, the better their long term prospects and quality of life,” Dr Wilne told us.

Children are almost always diagnosed after several visits to the doctor. This is, in many ways, the natural order of things – before referring a child for scans, a GP has to rule out other possible causes, which can take time, while symptoms can come and go.

“From a GP’s perspective one of the signs that something more serious might be going on is repeat presentation,” says Rubin. “As GPs, one thing we can do is to take the initiative and arrange to review a child after a few days, or a week or two, to check that their symptoms are getting better.”

The need for such follow up is, in large part, due to the biology of brain tumours – themselves a constellation of different diseases, with different symptoms. Dr Sophie Wilne’s team looked at the variation in diagnosis time with different symptoms in a study in 2011.

Overall, it took about 3 months from the onset of symptoms to diagnose a tumour, but diagnosis took much longer than this for some children. On average, children initially showed up at the GPs with just one symptom, but this built up to six by the time they were finally diagnosed. In the worst cases, children in the study were only diagnosed after seven years, and some after as many as 12 visits to the GP.

These findings, and others, led Wilne and her colleagues to develop the HeadSmart campaign – a rigorous, evidence-based brain tumour symptom awareness programme aimed at both parents and GPs.

“It took a long time to pull this together, working with parents, GPs and other clinicians,” she says.

After securing Lottery Funding with help from The Brain Tumour Charity (then known as the Samantha Dickson Brain Tumour Trust), the first step was a systematic review of all the available evidence on brain tumour symptoms, followed by a workshop to boil things down into a series of concrete recommendations.

The results, available on the HeadSmart website, have been a huge help in clarifying things for both parents and GPs, and have received the backing of the Royal College of Paediatrics and Child Health.

The ultimate aim is to try to reduce the time it takes to diagnose children with suspected brain tumours – and (just as important) to work out who not to refer.

“We’re just looking at the first round of data from HeadSmart, and although it’s too early to say for sure, things are looking pretty encouraging,” says Wilne.

But could other childhood cancers benefit from a similar approach? “Bone cancers have a similarly long time to diagnosis – for similar reasons. That’s where we should probably turn to next,” says Wilne.

Greg Rubin agrees. “That’s definitely on the agenda, and a cancer the Royal College of GPs is actively looking at,” he confirms.

Solving a complex puzzle

Georgia Hillman

Georgia recently started school

As we’ve seen, diagnosing cancer in children is one of the most complex issues in medicine.

Things are getting better, and will continue to do so as more studies point to where improvements can be made. There are, however, some structural issues that need to be solved, says Wilne.

“There’s definitely room for improvement. For example, there might be an issue where patients are seeing more than one GP – continuity of care could be slowing things down slightly in terms of repeat visits.

“It’s also possible that the conversation that’s often needed between a parent and a GP can sometimes take longer than a short consultation allows”. Average consultation times are currently just over 11 minutes.

Another issue is that NICE guidelines are often written in terms of the disease, not the symptoms. “It would definitely be helpful to look at how we do this,” says Wilne.

Finally, there’s the issue of terminology, and how patients and GPs communicate. ‘Red flag’ symptoms are often thought of by doctors in medical terminology, “but that’s not how parents talk,” says Wilne – so the way a parent describes what’s wrong with their child might not use the words or concepts that trigger medical alarm bells with a GP.

“It’s almost a problem of two languages, and we need to work towards a shared understanding – and that means educating parents as well as GPs.”

Childhood cancer is one of the most emotive issues in medicine. The loss – or possible loss – of a child is every parent’s worst nightmare, but also something every GP fears.

With initiatives like HeadSmart, hopefully the future will see many more happy outcomes like Georgia Hillman’s, and far fewer tales of anguish, frustration and heartache.

Henry


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Comments

Ken June 14, 2013

Here is a link with important information about Proton Beam Therapy:

http://www.specialisedservices.nhs.uk/info/proton-beam-therapy

Ken June 6, 2013

I would recommend all parents to look at the Referral Guidelines at: http://www.ncbi.nlm.nih.gov/books/NBK45758/
…and especially General recomendation No. 2

John April 25, 2013

I agree, proton beam therapy is great for children. Proton therapy is not available in the UK. It’s very expensive to send patients to the USA for treatment. Actually, a new centre opened in Prague recently – it’s closer to the UK and cheaper to be treated there. Why doesn’t the NHS send patients there instead? They could almost treat 3 patients in Prague for the price of 1 patient in the USA.

yogaseeker April 24, 2013

Children suffering from neuroblastoma or other “solid” tumours of the central nervous system should be treated with proton beam services if possible, they are been sent abroad for treatment at the moment as the UK lacks such treatment capability. Hopefully with sufficient funding, it can help improve overall survival rates.