You often hear people say that cancer in young people is 'rare'. There are around 4,240 children and young adults diagnosed with cancer in the UK each year. In the UK, a disease is considered rare if it affects under around 30,000 people (one in 2000 of the total UK population).
Statistics aren’t always easy to relate to though. So, when we hear the word rare, rather than weighing up risks and deciding that a group of diseases like childhood cancer deserve more consideration, we’re more likely to dismiss them as something that’ll never happen to us.
This is one of the reasons why parents of children and young people with cancer don’t like to use the word ‘rare’ when referring to their cancers. It can feel dismissive, as if those children were unlucky and people don’t need to concern themselves with it too much.
Whilst childhood cancer might statistically be less common, we often let much rarer things occupy our thoughts. Here are a few that are much less likely to happen to you and your loved ones than childhood cancer – but I can almost guarantee you have heard more about them…
Shark attacks
You only have to turn on the TV, or scroll through social media, to see something about shark attacks. We’re quite obsessed with them – I think it’s the expressionless faces, combined with the vastness of the open ocean and the unusual position of being the prey rather than the predator.
It is possible to avoid a shark attack, or even disorient them by hitting their sensitive snouts. But did you know that, worldwide, there were only 69 shark attacks in 2023? Of those, 14 were fatal.
Compare that to childhood cancer, where it is estimated that around 250 children pass away each year just in the UK. Worldwide, in part due to serious differences in healthcare, over 105,000 children died from cancer in 2022. So, why do we devote so much time and media coverage to shark attacks?
Meningitis
Parents are given huge amounts of health information and advice on how to spot the signs of meningitis. Awareness campaigns about bacterial meningitis have undoubtedly saved many young lives, and lots of people now know the common symptoms of the disease – like the pin-prick rash, fever, and light aversion.
However, bacterial meningitis is actually less common than children and young people’s cancer – one study found that, on average, there are less than a thousand lab-confirmed cases per year in the UK. Despite this, it is not often talked about as a ‘rare’ disease in the same way that childhood cancer is.
We’d love to see similar levels of awareness of the symptoms of children and young people’s cancer. Do you know the top childhood cancer symptoms?
Tetanus
Tetanus is a scary disease – it is life-threatening, has no cure, and can come from bacteria in the soil getting into cuts and scrapes. It’s rare, but we all know that we need to be careful if we get scratched or cut while working out in the garden.
But did you know that, for the past 10 years, there has been an average of only six established cases per year in the UK? In fact, if you add up all of the cases of tetanus from the past 38 years, you still only get 324 cases. More than 10 times that number of children and young people are diagnosed with cancer each year.
One of the reasons that the number of tetanus cases are so low is because of the amazing public awareness – have a nasty cut, go to A&E and get your vaccine. This cuts the infection off before it can become established.
Whilst cancer in young people cannot be prevented in the same way, awareness could make a big difference. If everyone knew the concerning signs and symptoms, then cancers might get diagnosed faster when tumours are smaller and easier to treat.
Plane crashes
With the number of films and articles about plane crashes, you would think they were quite common. We’re so sure that the big metal boxes shouldn’t be able to stay up in the sky that 10% of the UK population are afraid of flying, according to Anxiety UK.
However, in 2022 there were just 39 commercial passenger plane accidents worldwide (which includes botched landings without serious injuries), with five accidents that involved deaths. That’s out tens of millions of flights per year. Based on The International Air Transport Association’s report, the odds of being in a deadly plane crash is around one in just over nine million – which means that a child or young person is 516 times more likely to be diagnosed with cancer than someone is to die in a plane crash.
So, should we call it rare?
Parents have given us feedback that calling cancer in young people rare can make it feel like their family has been a casualty of luck. They want others to understand that anyone could be in the same situation and that awareness can make a difference. That's why we prefer not to use the term rare when refering to childhood, teenager, and young adult cancer as a whole.
When talking about the cancers that affect children and young people, the term 'rare diseases' is correct in a statistical sense. However, it takes the humanity out of it, making each young person into just a number. When children's and young people's cancer affects ‘only’ 4,240 patients a year, it is easy for funders and policymakers to overlook the numbers.
Sadly, we desperately need more funding for research into safer and more effective cancer treatments. Whilst many children and young people go on to live happy and healthy lives after their cancer treatment, others have few safe or effective treatment options. As a research-funding charity, we won’t stop until every child with cancer has a safe and effective treatment that is specific to them and their cancer – but we can’t do it alone.
Raising awareness of children and young people’s cancer could make a big difference. Not only could it help people recognise symptoms faster, and support those going through cancer better, it would also help put pressure on funders to prioritise childhood cancer.
If you want to help, don’t forget to sign up for Childhood Cancer Awareness Month in September here to get people talking about childhood cancer.
Read next: Busting the conspiracy – is there a hidden cure for cancer?
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters.
You can find Ellie on X: @EllieW_CCLG