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Cancer in kids, teens and young adults – why we’re renewing our focus

by Alan Worsley | Analysis

22 January 2015

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Cancer is mainly a disease of old age, as it usually takes time to build up the faults in the DNA inside cells that turns healthy cells into cancer cells. Almost two thirds of all cases occur in people 65 and older.

And yet children, teenagers and young adults can also be affected by cancer.

How and why this happens is one of the most difficult questions in cancer research.

Fortunately, cancer is relatively uncommon among young people. And thanks to better treatments, cancer deaths in children and young people have dropped by nearly 60 per cent in the past 40 years.

There are now 550 deaths per year among people aged 24 and under, compared to around 1300 deaths each year in the mid-1970s.

But that’s still 550 too many.

And despite these improvements, cancer remains the leading cause of death in children and the most common cause of death by disease in teenagers and young adults.

Quite simply, the job isn’t done.

To accelerate our efforts to ensure no young person dies of cancer, and that survivors can live the happiest, longest lives they can, Cancer Research UK is launching a new fundraising campaign – Cancer Research UK Kids & Teens.

There are unique challenges to diagnosing and treating young people with cancer – let’s have a look at them.

How far we have come

A lot’s changed since the dark days of the late 1960s when only a quarter of children survived cancer for at least five years. Now more than three quarters of children are cured. And over 15,000 more children have beaten cancer than would have done if survival had stayed the same since the 70s.

This success is thanks to two key elements of research. The first is uncovering the nuts and bolts of children’s cancers, and understanding how they are different from cancers in adults. The second is using that knowledge to find better treatments.

For example, in the 1970s Cancer Research UK scientists were instrumental in piecing together the biology of the most common form of childhood leukaemia, called acute lymphoblastic leukaemia, or ALL. They discovered there were actually four distinct sub types of the disease depending on what type of cell became cancerous. This discovery would completely change how ALL was treated.

On the back of this discovery, a series of clinical trials helped develop treatments that were tailored to each child’s particular type of leukaemia, with almost nine out of 10 children now surviving ALL today.

But the job isn’t done

However, success stories like this do not mean we can rest easy. Far from it.

There are still many types of cancer that afflict young people for which both survival and treatments are simply not good enough.

Some children’s cancers, such as neuroblastoma, still lag behind when it comes to survival. And this is why we are running several trials to find better treatments.

In the last decade, advances in genetics, immunotherapy and radiotherapy have opened up new avenues for treatments. We are better able to distinguish which cancers are more likely to be aggressive, so that we can tailor treatments for individual patients.

This new understanding presents an unprecedented opportunity to find better, kinder treatments for all young cancer patients.

But accomplishing this requires overcoming some unique challenges on two key fronts: improving how children’s and teenager’s cancers are diagnosed. And developing effective treatments.

Spotting cancer in the young

As we’ve blogged about before, diagnosing cancer is particularly difficult in young people.

This is partly due to the fact that compared to adults, cancers in people aged under 24 are relatively rare.

Around 1,600 children and a further 2,200 teenagers and young adults are diagnosed with cancer every year in the UK. But this compares to over 330,000 new cancer cases diagnosed per year overall.

In fact, the average GP only sees one new case of cancer in a young person every 12 years or more*. And the most common symptoms of cancer in young people are often the same as symptoms for many other illnesses.

This opens up a big challenge for GPs.

For example, one possible symptom of cancer in teenagers, a swelling in the neck, will only be down to cancer five times out of a 1,000.

As a result, young people quite often visit their GP several times while other more common illnesses are ruled out, before they are given a diagnosis of cancer.

But even when young people have potential cancer symptoms and consult the GP many times over a short period, the chance that cancer is actually the cause is still less than one per cent.

You can see how this is tough for anyone attempting to make an accurate diagnosis.

More research into understanding which cancers are likely to occur in young people, what drives them and how we can spot them earlier can help us change the way we diagnose these diseases.

In 2002, Professor Jillian Birch, who was then director of the Cancer Research UK Paediatric and Familial Cancer Research Group in Manchester, published a study categorising the types of cancers that teenagers are most likely to get.

They found that the most common types of cancers in teenagers are very different from those seen in either adults or children. There was even a substantial difference in cancer types between 15-19 year olds and 20-24 year olds.

Fundamental research like this helps us understand what cancers we should expect to see in young people and which symptoms to look out for.

But even after a cancer diagnosis, we still need to ensure that young people have access to the best possible treatments. And for this, we need clinical trials.

Clinical trials

Trials are essential for establishing the best possible treatments for all cancer patients. And children and young people are no exception.

Cancer Research UK’s dedicated Children’s Cancer Trials Team based at the University of Birmingham co-ordinates clinical trials for young people in 21 centres across the UK and Ireland, making sure they run smoothly and analysing the vast quantities of information they produce.

No other UK charity funds a dedicated clinical trials team for all childhood cancers. And these trials have produced some great successes.

For example, the Cancer Research UK-led series of SIOPEL trials found much better treatments for childhood liver cancer, boosting survival from 14 per cent in the 1970s to more than 80 per cent today.

The more clinical trials we can fund, the sooner we can work out the most effective treatments with the fewest side effects.

The proportion of children under 14 with cancer in the UK who take part in clinical trials is recognised as being very high by international standards: almost 60 per cent are involved in some form of clinical research.

But when you move up an age bracket, there’s much more work to do to make clinical trials more accessible to teenagers and young adults.

Research funded by the National Institute for Health Research and Teenage Cancer Trust found that in 2010 only 37 per cent of 15-19 year old cancer patients, and less than 20 per cent of 20-24 year olds, took part in a clinical trial.

This isn’t good enough. But why the difference?

Part of the reason is that teenagers often fall in the gap between children’s and adult’s cancer care. They can either have children’s cancers at an older age, an adult cancer at a younger age, or ‘true’ teenage and young adult cancers that are more specific to this age group. These can include Hodgkin lymphomas, bone and soft tissue sarcomas and germ cell cancers of the testis and ovaries.

Clinical trials have traditionally had a narrow age range for recruitment.

Making clinical trial age limits more flexible could go a long way to increasing access for teenagers. Rather than focussing on a “standard age” for a clinical trial, the age range should match the biology of the disease. In other words, if young people are diagnosed with what is typically thought of as a childhood cancer, then they should have access to those trials even if they are a teenager.

Cancer Research UK has already begun to address this issue by being one of the first major cancer research funders in the UK to start asking scientists to justify age restrictions on new studies.

But it’s not enough to just find the best treatments – we must also ensure that every eligible young person has access to those treatments.

Beating young people’s cancers sooner

Children’s cancers have always been a priority for us at Cancer Research UK.

Our research has helped double survival for children’s cancers since the 1960s. But we are still losing far too many young people to cancer.

And too many survivors have to tackle long term side effects in later life.

40 years ago children’s and teenage cancers were still a mystery. Now we can envisage a whole new way of tackling these diseases. But in order to do this we need to rethink how we can make the most of the latest discoveries.

So that’s why, at this crucial turning point, we are launching Cancer Research UK Kids & Teens. As part of this campaign we are bringing together a panel of experts from across the paediatric and teenage cancer community to come up with the best ideas to solve these problems and accelerate our progress.

With your help we can bring forward the day when every child, teen and young adult can beat cancer and put their future back in their hands.


*The figure is an average based on the number of UK 0-24yr cancer cases diagnosed each year divided by the number of UK GPs in 2009-2011.

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