Bullying and retinoblastoma: “I came home one day and asked ‘What’s a cyclops?’”

A new qualitative study has explored the ongoing social and emotional effect of childhood eye cancer and its treatment on teenagers and young adults.

The University of York research, which was published in BMJ Open, involved interviews with 32 retinoblastoma survivors between the ages of 13 and 29.

Themes explored as part of the research include survivor guilt, memories of treatment, as well as challenges during adolescence and the psychosocial impact of retinoblastoma.

Study participants described the long-lasting impact of retinoblastoma and how the condition has shaped their personality.

“If I didn’t have retinoblastoma when I was young, I would have been a totally different person,” a participant shared.

Many study participants shared that adolescence was a challenging time after experiencing childhood eye cancer.

One participant spoke about feeling unattractive – something that was reinforced by negative stereotypes around people with one eye in popular culture, such as pirate films and Roald Dahl characters.

“It was really panic inducing… I just thought I looked ugly,” the participant shared.

Another retinoblastoma survivor described being made aware of their difference by comments at school.

“I came home one day and asked, ‘what’s a cyclops?’ And they [parents] were like, ‘Oh, it’s a mythical creature with one eye.’ And I was like, ‘Oh, that’s what this boy calls me at school’,” the study participant shared.

Study lead and University of York PhD student, Nicola O’Donnell, highlighted that social acceptance is important after an individual experiences retinoblastoma – particularly if they have long-lasting physical changes as a result of the illness.

“Negative representations in the media and popular culture of people with one eye can be detrimental to people with facial differences, including survivors of this eye cancer,” she said.

The study authors have highlighted the need for integrated, specific psychosocial support for retinoblastoma survivors, delivered as part of long-term follow-up care. The research was funded by the Childhood Eye Cancer Trust.