Beating cancer is a huge milestone, but for many young survivors, the journey doesn’t end when treatment stops. Chemotherapy, radiotherapy, and surgery can leave lasting effects from hearing loss to vision problems to learning difficulties. For children and their care partners (often parents), understanding these effects – and knowing how to manage them – can make a huge difference to ongoing quality of life.
Hard numbers, real impact
In the UK, around 2 in 3 childhood cancer survivors will experience physical or psychological effects at some point.1 In a study of survivors, 79% experienced at least one late effect related to their cancer/treatment up to 16 years after diagnosis; over half (53%) reported three or more late effects.2 These figures are more than just statistics – they mean that many young people who have been through the ordeal of a childhood cancer face additional challenges well into adulthood.
Voices from survivors
Survivors describe a range of ongoing issues, including fatigue, learning difficulties, emotional struggles and social isolation.3 Survivors can feel adrift as there is little guidance about what to do and whom to ask when they experience late effects and many have reported feeling 'frustrated,' 'baffled' and 'lost'. Searching the internet for information on symptoms, specifically for late effects of childhood cancers, or information related to the experiences of other survivors, yields few useful results. One survivor shared, 'I just didn’t know what to do when I got sick. I wouldn’t know where to go. I searched on the internet a lot, but … there are only advertisements and not what I am looking for.… I felt somewhat frustrated about that.'4 This shows a real need for survivors and their families to get clear information and early support to cope with the long‑term effects of cancer and its treatment.
Why information matters
Late effects can influence school performance, social development, and overall quality of life. Families who are unaware of what to monitor may only seek help once problems become severe. Clear, engaging information for survivors and their care partners can bridge this gap, helping those affected spot issues early and get the right help.
Catering for different audiences
Cancer survivors range from toddlers to teenagers, so resources must be age appropriate. Illustrated guides can help younger children understand everyday challenges, while older children and teens may benefit from straightforward explanations about managing ongoing symptoms, follow-up care, or coping strategies.
Supporting care partners under pressure
For parents, the focus often shifts after cancer treatment – from survival to long-term quality of life. But the medical jargon around 'late effects' can be daunting. Materials that explain risks in plain language, give practical tips, and outline what symptoms to look out for can ease the burden. Families who understand what’s normal (and what’s not) are better equipped to advocate for their child.
Listening to survivors
The best materials are often shaped by those who use them. Cancer survivors and their care partners can provide valuable insight into what information was missing during their follow-up care, or what helped them feel reassured. Bringing families into the design process ensures resources aren’t just informative, but genuinely useful.
Bridging science and lived experience
TVF Communications work as translators - taking complex scientific data and transforming it into clear, accessible resources. We review clinical evidence, consult with patients and care partners (experts by lived experience) and health care professionals such as oncologists and audiologists to co-create materials, and ensure that these explain risks in a way that parents and children can understand.
Making patient materials matter
At TVF, we understand that information needs to do more than list risks - it needs to guide and empower. For survivors and carers, we work with stakeholders to ensure that materials do the following:
- Explain late effects early, in simple, age-appropriate language, so families know what to watch out for.
- Illustrate real-life scenarios, including quotations like those above, so that survivors see their experiences reflected and know they are not alone.
- Provide clear pathways: how to access appropriate tests, what to expect from interventions, what happens if things don’t improve.
- Be accessible and culturally sensitive, including information in multiple languages, visually engaging formats, and formats for low literacy.
Conclusion
Cancer treatment saves lives - and yet for many childhood cancer survivors, those lives are shadowed by long-lasting effects. Data shows these effects are common, and survivor stories make clear how they impact daily life. Engaging materials build built in collaboration with survivors and carers can help turn what often feels like a second battle into a journey navigated with understanding, dignity and confidence.
We’re excited to share that TVF Communications will be attending this year’s 57th Annual Congress of the International Society of Paediatric Oncology (SIOP) on October 20–23!
As specialists in healthcare communications, we’re passionate about creating engaging, patient-centered materials that support children, families, and healthcare professionals around the world.
SIOP is a unique opportunity to connect with the global paediatric oncology community, share insights, and learn from the latest research and innovations.
If you’re attending, we’d love to meet you and discuss how we can work together to improve the lives of children with cancer and their families. Let’s connect in Amsterdam.
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