Every year, around 4,500 children and young people up to the age of 24 are diagnosed with cancer in the UK. And thanks to research, around 8 in 10 of those diagnosed today will survive for at least 5 years.
It’s a big improvement in survival. But it’s not the full picture.
“The 8 in 10 statistic is an average,” says Dr Sheona Scales, who looks after children’s and young people’s research at Cancer Research UK. “It doesn’t show the disparity in survival between cancer types. And it doesn’t reflect anything about quality of life after treatment.”
Survival rates for some children’s cancers haven’t improved much since the 1970s. And of the children and young people who do survive their cancer, some experience serious, long-term side effects from their treatment, which can affect them for the rest of their lives.
We want to change this. Our aim is to improve survival across the board and reduce long-term side effects. And we’ve got a newly refreshed research strategy to help us get there.
Your challenge, should you choose to accept it…
Cancer in children and young people is different to cancer in adults – from the types of cancer and the impact of treatment, to the specific challenges facing the research community.
Someone who knows this all too well is Dr Susanne Gatz, a children’s cancer doctor and researcher at the Cancer Research UK Clinical Trials Unit at the University of Birmingham.
“There are lots of different types of cancer that children and young people can be diagnosed with, including ones that are unique to this age group,” she explains. This includes cancers like retinoblastoma and neuroblastoma.
“This, coupled with the fact that cancer is rare in children and young people can make these cancers difficult to research.” Gatz says that for people working in the area, there’s an incredible requirement to not only have a good depth but also breadth of knowledge. This includes knowing what’s needed in the clinic to help patients, but also what research is necessary and possible to achieve this.
“It also means we have to put in an enormous collaborative effort across borders in order to carry out research and clinical trials.”
Which can be tricky when there aren’t enough people researching children’s and young people’s cancers.
Scales, who led the development and implementation of our new research strategy, believes that the relatively high survival figures could be one reason more scientists aren’t choosing to research children and young people’s cancers.
“It clouds their perception of the fact that there’s still an urgency to improve our understanding of children’s and young people’s cancers, and to find new treatments with fewer long-term side effects,” she adds.
Whatever the reason, Gatz believes the community needs a boost. “We need more people who want to work in this area, who are then in turn supported enough to do so,” she explains. This includes help bridging the gap between researchers at the bench and the doctors who treat patients.
And she’s not the only one. To help develop our new strategy, we spoke to scientists in the UK and around the world to try and understand the challenges they face.
Our hope is that by allowing the community to share ideas and knowledge more easily, we’ll drive progress in this area
Dr Sheona Scales, paediatric lead at Cancer Research UK
What we heard from them echoed Gatz.
They told us that in order to make progress, there needs to be more researchers and better support, as well as access to large, structured collaborations with other scientists, including those who don’t work in children’s cancer research.
But the collaboration doesn’t stop there. Gatz says there needs to be a shift in thinking about how scientists can work more closely together with the pharmaceutical industry.
“We need industry to do things not because they have to, but because they want to, because we’ve shown them there’s a need in this area.”
Challenge accepted: our new strategy
“We’ve been hearing more and more from the research and parent communities that progress isn’t happening fast enough in this area,” explains Scales. That’s what we’re aiming to change, by tackling some of the key challenges outlined by Gatz and others.
Our refreshed approach, which builds on the work we’ve already done in children’s and young people’s cancers, has been developed in partnership with scientists, doctors, young people who’ve survived cancer and parents whose child was diagnosed with cancer.
“We want to support the children’s and young people’s cancer research community to be more joined up and collaborative,” says Scales.
Scales says we’ll begin by hosting workshops to encourage and facilitate collaboration between doctors and lab-based scientists and between cancer researchers and researchers from other fields.
“And excitingly, we’ve already begun work to establish a virtual children and young people’s cancer research network across the UK,” she adds. “Our hope is that by allowing the community to share ideas and knowledge more easily, we’ll drive progress in this area.”
It’s something that Gatz also believes is important for driving progress. “We are already sharing data, but we need to build on this to make it even more effective,” she adds.
And we’re not stopping there. To help boost funding, we launched the Cancer Research UK for Children & Young People’s Cancer Innovation Award. It’s open to researchers with an interest in helping more children and young people survive cancer, especially those who don’t usually work in this field.
“Although our research spend on children’s and young people’s cancers has gone up year-on-year, this hasn’t been by as much as we’d like,” says Scales. “We hope that funding calls like this will attract more researchers to the area, and that in the future, we can fund more high-quality research.”
We’re also exploring how we can encourage relationships between academic researchers and the pharmaceutical industry, to help drive development of new and better drugs for children’s and young people’s cancers.
Scales hopes that our refreshed strategy will demonstrate our renewed commitment to children’s and young people’s cancers. “We want to be part of this momentum for change, not just now, but for the long-term.”
A new hope
“I’m so excited about this strategy,” says Clara Markiewicz, a 22-year-old a soon-to-be-qualified children’s nurse who was diagnosed with cancer when she was 4.
“Today, I’m able to live my life without this fact overshadowing anything. But this still isn’t the case for many children and young people and there is still so much to be done.”
She says the strategy highlights the work that’s still needed to improve survival for children and young people with cancer. And to ensure their futures are impacted as minimally as possible by having had cancer.
“But it also offers hope to those affected that they can make it through their devastating diagnosis and go on to lead full, healthy lives.”
Lauren Griffiths is a brand executive for children’s cancers