For many, the end of treatment marks the beginning of another journey, with its own challenges. My research explores how growing up with the visible, and sometimes invisible, effects of childhood cancer can shape how young people see themselves, and how they navigate identity, confidence and body image through adolescence and beyond.
Regardless of cancer type, many children experience changes in appearance that can have a lasting emotional impact. These may include scars, hair loss, surgical differences, or use of artificial body parts. For example, children diagnosed with retinoblastoma (Rb) are sometimes required to have one or, very rarely, both eyes removed as part of their treatment. This leaves a visible, lifelong reminder of their illness. These facial differences are outwardly visible, even with the use of prosthetic eyes, and therefore shape body image in complex ways. In interviews I conducted with more than 30 teenage and young adult Rb survivors, many spoke about the enduring impact of these differences. Almost all recalled moments when they felt “different” or worried how others see them. Some described being bullied, stared at, or avoided – experiences which are echoed across the wider childhood cancer community.
Adolescence: when identity and body image collide
Many young people described adolescence as especially challenging, as appearance starts to matter more and mental health support is often hardest to access. For some Rb survivors, comfort with their prosthetic eye in childhood shifted to anxiety later. Survivors of other cancers describe similar experiences – scars, facial changes and long-term treatment effects like learning difficulties making them feel exposed or different. This can shape how young people see themselves and how they think others see them, affecting self-esteem and confidence. However, not everyone felt negatively impacted. For some, feeling different sparked determination to avoid being defined by their cancer. Many young people want to shape an identity beyond their cancer experience, balancing the need to fit in with the wish to be recognised for their unique qualities.
Coping with visible differences and invisible emotions
Young people found creative ways to cope. Some expressed themselves through fashion, humour, or hobbies. Others embraced their differences – for example, by choosing colourful or personalised prosthetic eyes. But acceptance is rarely straightforward. Even confident young people were sometimes criticised for ‘drawing attention’ to their appearance. Approaches like Acceptance and Commitment Therapy (ACT) can help. ACT teaches young people to notice upsetting thoughts without letting them dominate, focus on what matters to them, and build confidence through valued actions rather than trying to look a certain way. Learning to relate differently to thoughts and feelings (whether your own or those of others) can be a big step towards self-acceptance.
Broadening our research
The challenges seen in Rb survivors – anxiety, identity struggles, body image concerns, isolation, and medical trauma – aren't unique to this cancer. My team at the Candlelighters Supportive Care Research Centre at the University of York is partnering with OSCAR’s Paediatric Brain Tumour Charity to co-design research centred on young people’s voices. We’ll explore the impact of the visible and not-so-visible changes (such as learning challenges and rebuilding confidence). This builds on our work with the Childhood Eye Cancer Trust and is a key step towards developing evidence-based psychological and educational resources to help as many childhood cancer survivors as possible.
Moving forward with hope
The emotional, social, and body image effects of being diagnosed and treated for cancer as a child or young person can last a lifetime. Recognising these challenges is essential for holistic care. Families and young people, meanwhile, can be reassured that these challenges are common. We’ve created videos and podcasts featuring Rb survivors and will continue sharing insights with those affected by other childhood cancers. With understanding, compassion, and tailored support, young people can embrace their differences, develop a positive sense of body image, grow in confidence, and move forward with hope.
From Contact magazine issue 110 | Spring 2026
