“Cast your mind back to how you were when you were 18,” says Caroline-May Huxley, who helps set our research strategy for children and young people. “Think what it would have been like if you had to go through something like cancer.
“Everyone can relate to that.”
Relating is step one. For Teenage and Young Adult Cancer Awareness Month, we’re focusing on the unique challenges young people face before and after a cancer diagnosis. To solve them, we need to understand why they’re so different.
But some people don’t have to imagine what Huxley’s talking about. People like Katie, one of the experts on our Cancer Research UK for Children & Young People Insights Panel, have had to live it.
Diagnosed at 18: Katie’s story
“I went from being a normal 18-year-old to having chemotherapy, losing my hair, taking loads of other tablets and having scans all the time, to trying to transition back to the rest of my life,” says Katie. “I’m going to be completely transparent. That was not easy.
“I wasn’t aware of cancer symptoms, or the effects of chemo. I didn’t even know what Hodgkin lymphoma was until I was diagnosed with it. I genuinely sat in the consultant’s room and thought, ‘It’s not cancer: it’s never going to happen to me – it’s only within old people.’
“Then I became quite closed off.
“The chemo made me very weak, very tired. I lost friends, which is sad to say, but a lot of people my age didn’t understand.
“And, if I’m honest, I blocked it all out for a long time, because I wanted to be a normal 18-year-old.”
And being a normal 18-year-old takes enough energy and effort already. Even without cancer, teenagers and young adults are already experiencing some of the most momentous changes any of us will ever face.
Physically, their bodies and brains are reinventing themselves. Mentally and socially, it’s no less dramatic: pulled this way and that, in school, relationships, work and university, they’re defining who they are – finding their way in a confusing, changing world.
This article is about what we’re doing to stop cancer getting in the way.
What’s missing for teenagers and young adults with cancer
We need to start by explaining the problem. Historically, cancer care and cancer research have been split into two distinct areas: childhood cancers and adult cancers. Teenagers and people in their early 20s don’t fit neatly in either category.
“If you’re 16 years old, and you’re in a children’s ward, with all these toys and animations, do you feel like you fit in?” asks Huxley. “If you’re 24, and you’re on a ward with 60 to 70-year-olds, do you have peer support?”
It’s also harder for teenagers and young adults affected by cancer to take part in clinical trials, which are how researchers find new and better treatments.
Most trials are for older adults or younger children, meaning teenagers and young adults might not be eligible to join. Even if they are, it’s unlikely they’ll be given therapies or have treatment protocols that are tailored to their unique circumstances.
“What you tend to get is a lot of toxicities, a lot of long-term side effects,” explains Huxley.
“And there’s a huge lack of data for teenagers and young adults. We don’t have a lot of samples, which means that researchers can’t examine the mechanisms underlying why they get cancer and why they get toxicities from treatment – all these sorts of things.”
Those gaps in our knowledge can have profound consequences.
Around 2,300 15 to 24-year-olds in the UK are diagnosed with cancer every year. Cancer incidence for the age group has increased by more than 20% since the early 1990s.
And, every year, around 250 teenagers and young adults in the UK die from cancer – more than from any other disease. Even successful treatments can lead to long-term issues like infertility, loss of vision, and lung and heart damage.
As long as we don’t understand what makes these cancers unique, we’ll struggle to improve how we treat them.
What we’re doing to make things better
For Teenage and Young Adult Cancer Awareness Month, we’re coming together with other leaders in cancer research and cancer care to make better, more tailored treatments possible. We want more young people to survive cancer, and we want to make sure they can move on from it with a good quality of life.
We’ve been working up to this for a while. Since 2021, Huxley has been leading a project to understand how we can make clinical research more accessible – and more relevant – to teenagers and young adults with cancer. As well as talking to researchers and funders, she’s heard from dozens of young people and families affected by the disease.
“The TYA community – the patients and the parents – are so motivated and so passionate,” she explains. “They were very, very generous with their time and their contribution to this. And there’s so much altruism with young patients. They want to play their part. Even if it doesn’t help them, they want to help young people in the future.”
Katie’s a shining example of the passion, care and generosity Huxley is talking about. It’s not just that she’s a member of our Children and Young People Insights Panel: this month, she’ll also be taking part in her second Race for Life.
“I joined the insights panel when I’d just started to accept what had happened to me, what I’d been through,” she says.
It was part of the process of coming to terms with her cancer journey.
“When I was going through chemo, I think the only thing I was focused on was getting through every session. I think I knew I was isolated. But I was so tired, I couldn’t focus on it.
“Now it’s just so important for me to do these things to raise awareness. This isn’t spoken about enough. And I think if more people knew, it wouldn’t be so isolating.”
Huxley agrees, but she knows that, as the UK’s leading cancer charity – working across all ages and cancer types – we also have another role to play. People like Katie share their experiences and personal stories and with us because they know that we can make a difference to the teenagers and young adults that will come after them.
“The question is, ‘What are we actually going to do about it now? How are we going to hold ourselves accountable? How are we going to be responsible and play our role in this?”
Here are some of our answers.
1. The Experimental Cancer Trial Finder
The first challenge Huxley identified centred on making trials for teenagers and young adults with cancer easier to find. It’s one that Katie’s also been thinking about on the insights panel.
We believe every teenager and young person with cancer who’s suitable for a trial should have an equal chance to take part in one. And the more people who join trials, the more we learn about how to make cancer treatments work better and cause fewer side effects.
Traditionally, though, doctors and nurses have had to read through dense lists of hundreds of studies to find one that might be suitable for their patients. Rarely do they include information for 15 to 24-year-olds, either.
The Experimental Cancer (EC) Trial Finder is changing that. It’s a free search tool that cancer specialists can use to match patients to clinical trials taking place across the UK’s Experimental Cancer Medicine Centre (ECMC) network. Rather than splitting trials into children’s and adults’ categories, it makes it possible to search by age – as well as other important factors like location, cancer type and treatment method.
As well as making it easier for doctors to find suitable trials for their patients, the EC Trial Finder can also help trials targeting smaller patient groups – like teenagers and young people – recruit the people they need to move forward.
And, although the EC Trial Finder isn’t available to the public, its monthly updates are shared with our Find a Trial team. They then translate the trial information into language that’s easy to understand and upload it to our Find a Trial database, which is open for patients and their families to search.
2. The DETERMINE Trial
Finding a trial is one thing; making sure it’s age-appropriate is another.
The second challenge highlighted by Huxley’s interviewees was around making research more accessible and inclusive for teenagers and young adults. The DETERMINE trial, which we’re running with the University of Manchester and the pharmaceutical companies Roche and Novartis, is modelling a way of doing just that.
DETERMINE is a trial for children, teenagers and adults with rare cancers. It will explore whether treatments approved for use in some cancer types can target matching genetic alterations in other, rarer ones. It’s a way to provide new treatment options for those who might not have any others left.
The trial’s unique design means that any drug that appears to be working could be fast-tracked for use as a routine treatment option on the NHS for patients with the same cancer type.
DETERMINE will also be open across the adult and paediatric ECMC network, with centres in all four UK nations. That helps to ensure that people can receive their treatment as close to home as possible.
“This is a real springboard for how pan-age trials can be delivered across the UK,” says Huxley. “If we can get drugs approved through the accelerated process of the Cancer Drugs Fund, we’ll have data from TYA patients taking part in the trial, so we’ll be able to use them for teenagers and young adults more broadly.
“A lot of our ECMCs are saying this is a great example. And it’s not a one-off – it’s something we can do more.”
3. The VIVO Biobank
We’ve also teamed up with Blood Cancer UK to put together the VIVO Biobank, the UK’s biggest resource for storing and studying samples of cancers in children and young people.
Cancers in teenagers and young adults aren’t just different from cancers in other age groups, they’re often very different from each other. Only a very limited number of people are affected by each cancer type at one time, which makes it hard for researchers to gather enough relevant samples to study them. Without a biobank, that is.
Biobanks are safe places to store samples and data from cancer patients. They can be much more, too. The VIVO Biobank “unites researchers, medical professionals, patients, partners, donors, and charities – all with one goal in mind: to push the boundaries of research into childhood and youth cancers.”
And, even before this new, bigger, biobank came together, banked samples had helped scientists develop new tests to diagnose cancers in children and young people, better methods for making treatment decisions based on cancer risk, and new ways to monitor how cancers are responding to treatment.
“This has all led to a better understanding of tumour biology, leading to the development of new treatments for children and young people’s cancer,” explained Professor Christina Halsey, Head of the School of Cancer Sciences at the University of Glasgow, when she talked us through the scientific ins and outs of the VIVO Biobank last year.
There’s plenty more improvements like that to come.
Keeping teenagers and young adults with cancer at the heart of our work
This is the UK’s first Teenage and Young Adult Cancer Awareness Month. The projects we’ve listed above are early steps towards giving these cancers the unique, focused attention they deserve. Already, though, the direction they’re heading is clear.
“This kind of work is how we deliver on our research strategy for children and young people,” says Huxley. “Teenagers and young adults are a group that can be overlooked and forgotten about, but we’ve created a springboard, or a legacy in a way, for how we think about them in what we do, and the impact we could have for them.”
And we have other guiding lights, too. Like Katie.
“I signed up to raise awareness and to help others,” she says. “If I can touch even two or three people with my story, it helps me to know I’ve made a difference.”
To find out more about our work
- Read our new About Cancer page on teenage and young adult cancer types, symptoms, treatment, research and support.
- Track the full ECMC Roadmap for ‘Working together to improve access to clinical trials and biobanking for teenagers and young adults with cancer‘.
The facility for adding new comments to articles has been temporarily turned off. It will return when we launch our newly designed website shortly.
Aileen Murgatroyd April 18, 2023
Excellent ideas as the Mum of Kay diagnosed with lung cancer at age 17, such an important area.
A lot of the doctors couldn’t even communicate effectively to Kay during her early tests !
But the teenage cancer unit at Weston park were & still are amazing