Are young people with cancer different from other cancer patients?

Welcome to a special edition of Research Roundup in honour of the first ever Teenage and Young Adult Cancer Awareness Month!

Teenage and young adult cancer is underfunded and under researched, and we want to help change that. In partnership with 15 other cancer charities, CCLG made April the very first awareness month for teenage and young adult cancer. This puts the spotlight on young people with cancer and the challenges they face.

So, are teenagers and young adults with cancer different from other cancer patients? The short answer is yes. Whilst most people know a lot about adult cancers from friends’ or family’s experiences, a lot fewer know much about childhood cancer. When it comes to teenage and young adult cancer, that number is even lower. But did you know that teenagers and young adults don’t fit into either box?  They also have different healthcare priorities to both children and adults and this has to be taken into account – for example,  after they turn 16 they may  consent to treatment themselves, rather than their parent or guardian.  This can affect what treatment decisions are made, as can making sure that the treatment won’t cause too much damage to their still developing body.

Despite that, there is very little attention on young people’s cancers, and little research funding available specifically for that age group. TYAC are working to change the future for children with cancer. TYAC’s goal is to fund research that answers young people’s priorities, provide information to those going through cancer, and come together as a professional community dedicated to the needs of teenage and young adult cancer patients. So, what’s different and why do we need research specifically for this age group?

Different priorities

Firstly, young people have completely different priorities to children and adults. The top priority in young people’s cancer research, chosen by teenagers and young adults themselves, is what psychological support can help with mental health, wellbeing, and social interactions during and after treatment.

Young people are often at a critical stage in their lives – one full of change but also full of opportunities. They might be about to go to university, starting their first job, revising for all-important exams, starting their first relationship or leaving home for a new place. Whilst this can be exciting, it can also be terrifying – and that’s for the average person who doesn’t have cancer. Cancer throws a huge spanner in the works, and it is no surprise that teenagers and young adults need extra help to cope with their cancer alongside all of these changes.

Different cancers

The most common cancers for teenagers and young adults can be different cancers to adults or children.  Whilst some young people’s cancers are the same type as adults’, the amount of people with each cancer can be very different. For example, one of the most common types of cancer in young people is lymphoma – this cancer type barely scrapes into the top ten most common cancers in adults.

Sometimes, cancers that can be found in other age groups behave differently in young people. Dr Anbarasu Lourdusamy, funded by the Little Princess Trust in partnership with Children’s Cancer and Leukaemia Group, spent just over three years researching medulloblastoma in young people. This is a type of brain tumour that also occurs in children and adults. He found that medulloblastoma cancer cells from teenagers and young adults had very different genetics to other age groups. This is just the first step towards better understanding of young people’s brain cancer, but Anbarasu’s findings could have an impact on how medulloblastoma is diagnosed and treated.

Different treatments

Whilst many of the same treatment options are available for teenagers and young adults, there are other factors that need to be considered in this age group. For example, young people may place more importance on making sure they can have children in the future, so treatment plans may need to be changed to reflect this. There are also less ‘standard’ treatment protocols for young people because this group of patients is very variable and we don’t know as much about how to best care for them.

Sometimes adult treatments aren’t as effective for young people, but doctors must also remember that this age group is undergoing a lot of changes as their bodies grow and develop. If doctors give too much of a particular cancer treatment, it might be more likely to cause damage for young people that leads to long-term side effects like infertility or learning difficulties.

Treating teenagers and young adults can be a little like walking a tightrope – ensuring that there is enough treatment to kill the cancer, but not so much that the patient has a bad quality of life going forward.

Different amounts of research

The simple fact is, we don’t know enough about young people’s cancer. There is considerably less research, fewer clinical trials, and much less funding available. To give you a rough idea of the scale of this issue, you can look at the clinical trial registry. A quick search for trials that are currently open to teenagers and young adults with cancer in the UK yields only 28 results. A search for children’s cancer trials recruiting in the UK gives 177 open trials and a similar search for adults shows a huge 828 trials open.

It does make sense to see so many more adult clinical trials than young people’s, as cancer in older adults is much more common. However, there are fewer children diagnosed with cancer every year than there are teenagers and young adults – so why are there over six times more trials available to children?

Delayed diagnosis

Getting diagnosed quickly is one of the most important parts of cancer treatment. It means that treatment can start sooner and have a better chance of curing the cancer. However, young people often get diagnosed later than children or adults with cancer.

Researchers believe this is partly because young people don’t know much about the cancers which affect their age group, or their symptoms. A lot of symptoms, like tiredness or swellings, are more often related to more common illnesses. Sometimes, young people may not notice the symptoms, or may feel too embarrassed to go to the doctors. However, even doctors may put the symptoms down to other illnesses. One study found that, for every 200 young people complaining of a lump in their neck, only one person would have cancer.

This delay is having an untold impact on the care and survival chances for teenagers and young adults with cancer.

How could research help?

The first, and most obvious, result of research is simply knowing more about young people’s cancers. Finding out more about how cancer cells work in a teenage body and what they need to survive can eventually lead to targeted treatments that are safer and more effective.

All of the really effective new treatments for childhood cancer, like immunotherapy, have only been possible because of years of research. With better treatments comes better survival. Childhood and adult cancers have had a head start on research – but that’s not to say we can’t catch up.

A really important area for young people’s cancer research is supportive care. This refers to the range of treatments and services that are provided to help people with cancer manage the physical, emotional, and social effects of the disease and its treatment. It can be anything from anti-sickness medication to therapy with trained psychologists to help process and accept the huge chances that come along with cancer.

We even need more research about research – research to find out why there aren’t many teenagers and young adults in clinical trials so that researchers can devise ways to include them. This could help young people access new and potentially life-saving treatments.

How could you help?

Reading this blog is a great start – now you know more about young people’s cancer and can help spread awareness (you could share this blog on your social media or share other #TYACAM content)! Read up on the symptoms to make sure that you are able to recognise the signs of cancer in your friends and family, and don’t forget to talk to them about it too.

If you want to help more, fundraising for CCLG is a great option. CCLG works to change the future of young cancer patients by funding research, providing information, and advocating for their care. They also work with cancer care professionals to raise awareness and develop guides on how best to treat and support young people.