An uncommon cancer diagnosis: understanding lived experiences

Uncommon Cancers patient representative Margaret Perkins

Patient representatives for our Uncommon Cancers research theme, Alison Allam and Margaret Perkins, were instrumental in planning and delivering a pilot project to understand the lived experiences of patients with uncommon cancers.

Margaret discusses how they shaped this research and the impact it will have for patients.

What was the project?

We got involved in developing a small project – known as a pilot study – to understand more about the experiences of patients diagnosed with an uncommon cancer. We particularly wanted to find out more about the problems encountered around diagnosis, unmet patient needs and the impact of a diagnosis on those close to the patient.

This project was a co-production, meaning that we – as patient representatives - worked with research and clinical staff throughout, from the generation of the initial idea, planning and delivering the study to analysing the results. Our project was, in fact, the first co-production pilot study to be initiated by the NIHR Biomedical Research Centre at The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research, London!

Our proposal was approved as a Service Evaluation by The Royal Marsden’s Clinical Research Committee and we successfully secured £5000 to support our study from the Centre for Co-Production in Health Research at University College, London (UCL).

Why did you get involved?

The key driver behind our project was Alison’s own experience of a family member’s uncommon cancer diagnosis. We both have a keen interest in research into uncommon cancers, which typically affect younger people and can present particular challenges for researchers due to the relatively small patient numbers, which can make it difficult to collect valid and generalisable findings.

What did you do?

We formed a research team with two clinical nurse specialists (CNS) working in the melanoma clinic at The Royal Marsden and worked together to develop our research proposal: to hold focus groups with melanoma patients to better understand their lived experiences. 

The nurses recruited four patients (two male and two female) for the focus group and we developed a study information sheet to help patients decide if they wished to take part, a topic guide for the focus group and a consent form.

Together with one of the nurses, we led the focus group and recorded the audio, with the participants’ consent, for subsequent analysis.

What did you want to achieve 

The purpose of the focus group was to understand the participants’ experiences of being diagnosed with an uncommon cancer, in this case melanoma, and the support and care they received during and following diagnosis, as well as the emotional and practical difficulties experienced.

What was the impact of this project?

Three common themes were identified as a result of the focus group:

  • the wide variety of routes to diagnosis
  • the impact of the diagnosis and the care and support that might have helped
  • the impact of the diagnosis on wider family and others close to the patient

Another major finding from the study was that this group of patients reported feeling socially isolated, lacked information and wished to have a greater peer support network available to them.

Everyone involved felt the pilot had been a major learning experience into the wider issues faced by patients with this type of uncommon cancer.  The nurses also gained a different perspective of the range of difficulties faced by their patients.  

Participation in the focus groups also had a positive impact for the patients, who commented that this was the first time they had been able to discuss their situation and difficult experiences with people living in a similar situation. The participants were also keen to be involved in further projects, involving a wider group of patients with uncommon cancers, which is currently under discussion.