TYAC researcher brings together young people who have had skin cancer and professionals at special event

Dr Wendy McInally, who leads Teenagers and Young Adults with Cancer (TYAC)’s first research project, hosted an event last month at the Royal College of Nursing which brought together survivors, clinical specialists and key stakeholders with experience of melanoma to inform the next steps of her research.

Dr McInally, from the Open University, is working in collaboration with the Royal Marsden Hospital, Professor Suzanne Cruickshank, and Dr Emma Hainsworth, to investigate the experiences of young people with skin cancer and their significant others. Her goal is to improve services for teenagers and young adults diagnosed with this disease.

She began the day with a talk about the research, covering progress and results so far. Common themes emerged, such as knowing something is wrong but not knowing what, the uncertainty around diagnosis and support, feeling different than older adults with cancer, and a lack of understanding from peers.

Jack Brodie, a consultant on the project who had skin cancer at 16 years old, also spoke at the event. He talked about his experience of being diagnosed with melanoma, which resonated with other young people in attendance and echoed many of the comments from participants interviewed in Dr McInally’s research.

A discussion workshop was also held with mixed groups of professionals, survivors and significant others. This highlighted the lack of awareness of skin cancer in young people, the difficulty they faced in getting diagnosed, and the additional mental load they carry after follow-up care ends.

Dr McInally is currently analysing her data in order to publish her findings and present at an upcoming global adolescent and young adult cancer conference. She will also be developing a number of podcasts to support early career researchers, covering ethical challenges, how to recruit teenagers and young adults for research, and the analysis used in this project and its findings. She said:

Skin cancer in teenagers and young adults is on the rise in the UK, and so it is important to research this area of care and improve the cancer trajectory.

Although not common in children, children can also be diagnosed with this disease and may go on to have further recurrence as young adults. Engaging with young people with this particular disease is challenging as not all will be seen within a primary treatment centre for cancer.

However, this study has overcome the challenges through collaborative work and the support of the research team - I could not have done this without them.”

She is also planning further research with more patients from across the UK, and their significant others, to understand their experiences over time, starting from when they first notice symptoms, going through the diagnosis and treatment, all the way to recovery.

Ashley Ball-Gamble, Chief Executive of TYAC, said: “This event was a reminder of the incredible value and power of lived experience in research.

“It was very powerful hearing young people - and their loved ones - sharing their experiences. This informs and enhances research, as well as ensuring that researchers and funders are exploring the issues most important to those who will benefit from the research.”

Find out more about the project