April is Teenage and Young Adult Cancer Awareness Month. We caught up with one of TYAC’s first funded researchers, Dr Nicola Hughes, to learn more about cancer research for young people.
Nicola is a registrar and researcher in teenage and young adult (TYA) cancer. She spends half of her time treating patients in West Yorkshire and half her time at the University of Leeds, researching young people’s cancers. Here’s what Nicola had to say…
Dr Nicola Hughes, University of Leeds
Do you love your job and why?
I really do love my job. On the clinical side, I find it a real privilege to be involved in a patient's care and be able to get to know the patients, their families and their friends, and to help them through treatment.
From the research side, I really enjoy being part of the fantastic research community that surrounds teenage and young adult (TYA) cancer.
Everyone has the same aim of improving cancer care and outcomes for our patients. It's really exciting to see new research findings emerge, both from other research groups and from our own findings.
Why did you choose to work in teenage and young adult cancers?
I've always enjoyed treating TYA patients clinically, and lots of the unique challenges faced by young people align with my own research interests.
For example, lots of the treatments that we give these patients are intense and cause a lot of short- and long-term toxicity. One of my research interests is to ensure that we give enough treatment to cure the cancer, but also to minimise the life-threatening toxicity faced by patients. We also want to reduce the longer-term late effects, which can really affect an individual's quality of life.
I am also inspired by Professor Dan Stark, who is an excellent role model and has been my long-term supervisor.
You are about halfway through a project funded by TYAC. What is it about?
My project is using existing healthcare data to investigate the effects of kidney damage in teenagers and young adults who've had chemotherapy. The kidneys are really important organs, and long-term damage can lead to chronic health problems such as hypertension, anaemia, and heart problems.
We're investigating which patients get kidney damage, at what part of treatment it occurs, and when it starts to show itself and really affect patients.
Nicola with Professor Richard Feltbower, displaying a poster about her work in children’s and young people’s cancers.
If the kidneys are no longer working properly, does that mean these patients need dialysis?
Our work is more looking at chronic kidney damage, which goes undetected. We think it could be picked up a lot sooner than it is currently. At the moment, we can often only diagnose it once we see symptoms, which means that too much damage has been done already.
We're looking at ways we can treat it better or pick it up earlier, such as looking at patients’ blood tests to see whether there are any markers that could diagnose patients sooner.
There's also a new drug that we are looking at. It’s actually a medicine for diabetes, but there's some suggestion that if we give it can delay the onset of kidney damage for at-risk patients. Some patients do end up having dialysis and so this drug could help prevent patients getting that far.
Why is it helpful to repurpose an existing medicine?
The drug is already licensed, so it'd be quite easy to organise a clinical trial. Maybe one of the next steps after the TYAC-funded grant is seeing whether the drug does make a difference for these patients. The problem will be that kidney damage happens quite slowly, and can show symptoms a while after treatment, so it would be a slow burner rather than an easy quick win.
What impact do you hope your TYAC project will have?
My aim is to be able to identify patients who are most at risk of kidney injury. We could then tailor follow up in these patients so that any kidney problems are picked up earlier. We could then also support these individuals with how to maximise their health in the longer term.
We hope that this will improve care and quality of life for patients who do experience kidney damage following chemotherapy treatment.
This year's theme for TYACAM is empowering young people around healthcare. What does this theme mean to you?
For me, it means giving young people the opportunity to take control of their own healthcare decisions. Particularly in relation to my research, this means the ability to take control over their own healthcare data. This means they need to know what's stored about them and where it is stored.
Nicola with colleague Kirsten Cromie at a Candlelighters stand. The poster is promoting the Yorkshire Specialist Register of Cancer in Children and Young People – a collection of vital information about people who have cancer in Yorkshire aged up to 29 years old.
The most important thing to me is involving young people in decisions about how their data is used for research and what kind of questions it is used to answer. This would have a number of benefits to patients, like breaking down barriers so that their data can be used to improve their cancer treatment and care. Involving patients in choosing how their data is used also ensures that the questions asked of the data are relevant and important.
Is that different information to the healthcare data you use in your project?
With the anonymised healthcare data I have used, patients don't give consent for their data to be stored because current rules allow data to be collected if it's for the good of the general population.
However, there are places where we need more data. One current problem is, for example, the lack of access to social outcomes data, like whether there is a greater risk of being on benefits or what people’s employment is like after cancer. The lack of this type of data is a problem across all ages, but it has more relevance in our patients because the age at which they get cancer affects their employment abilities, their education, and it has a longer impact on them.
Research about these topics is important to young people, but we can't currently link to these registries and it’s really hard to get the data for research. We're hoping to involve patients in lobbying the government for access to that kind of data.
Do you have any advice for teenagers and young adults going through cancer?
I would recommend using the great support from charities such as TYAC and Trekstock. They're fantastic at helping patients with all aspects of going through treatment and coming out the other side. I think they're an invaluable resource to take advantage of.
Is there anything else that you want people to know?
It’s essential to encourage others to get involved in TYA research, because it's quite an under researched area. It's not one of the most popular ones that new researchers think of going into, but sharing our research and presenting our work can definitely help. We've been able to recruit some new doctors from Leeds recently because I did a presentation and showed them all the different areas you can go into within TYA research.
We need to be shouting about what we're doing and, and getting more people involved!
Read next: How do young people feel about skin cancer and why does it matter?
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