When PhD student and researcher, Ben Lond from De Montfort University in Leicester, began exploring mesothelioma, he noticed a major gap in understanding – the experiences of younger adults under 60 living with the disease. Although mesothelioma is often associated with older people and in males, Ben knew from personal experience – his great aunt had the disease – that the reality was more complex.
His interest deepened when Liz Darlison, CEO of Mesothelioma UK, approached the university to collaborate on new research. Seeing the opportunity to contribute to a national charity and shed light on underrepresented experiences, Ben began a study focusing on the voices and challenges of younger mesothelioma patients.
Simon Bolton, one of our network of Mesothelioma UK Clinical Nurse Specialists, spoke with Ben to ask a few questions about his study and findings.
Why did you want to research this topic?
“Most existing literature focuses on older males with pleural mesothelioma, there’s a clear need to broaden this understanding as we weren’t seeing a picture of younger individuals living with this condition. Mesothelioma is still stereotyped as an older person’s disease, but younger patients and more women are being diagnosed.”
Simon agreed: “We see more women and younger people who have been diagnosed in our support groups than ever before.”
What is your study about and what were your findings?
“My study revolved around interviewing 18 individuals with both peritoneal and pleural mesothelioma. From a younger person’s perspective, we found that one of the biggest challenges is simply getting a diagnosis. If they were older, their symptoms might be recognised sooner as potential signs of mesothelioma. But because of their age, this possibility is often overlooked, meaning the diagnosis only comes after further tests – leading to shock, distress and avoidable delays. The stereotype of what a “typical” mesothelioma patient looks like is still very much present.
“Beyond diagnosis, younger people face additional pressures around employment, finances, childcare and a strong sense of isolation. Many feel disconnected from traditional support options, which is why the online support groups provided by Mesothelioma UK are especially valuable and appreciated.”
What was a surprising element which you didn’t expect in your findings?
“Something surprising I found during my research was how clinicians often dismissed the possibility of mesothelioma due to age, only for patients to discover later that it was the correct diagnosis.”
What do you think was the most meaningful part of the research?
“For me the most meaningful part of the research was exploring how younger people rebuild their lives after diagnosis and promote their wellbeing. From the trauma of diagnosis to finding new routines, taking holidays, and adapting daily life- hearing how others cope and adapt during the early, most challenging weeks can provide valuable reassurance and perspective for those facing a similar journey.”
From your perspective, how could these findings impact how mesothelioma is diagnosed, treated or managed?
“I would suggest for there to be a campaign of awareness for both the public but also within the medical field. It’s true that, on average the patient demographic tends to be older, but it is not exclusively an older person’s condition– this needs to inform clinicians perspectives so they can use this in their advice. They need to avoid cases of clinicians saying it’s definitely NOT mesothelioma. The other thing I would say is, psychological support for patients and practical strategies they can use to manage their anxieties, i.e. developing resources and daily strategies they can do like daily walks and exercise – this has a physical and psychological benefit.”
For people living with mesothelioma and their families, what is the key takeaway they should remember from your research?
“I would say they should remember to focus on their journey. People go online and see worst-case stories and then catastrophise from there, but the mesothelioma space is evolving in terms of research and treatment – take it one step at a time and avoid getting fixated on headline narratives and getting into a negative headspace from it.”
What were the biggest challenges you faced in carrying out this research and how can charities like Mesothelioma UK best support research like yours going forward?
“Recruitment and funding are common hurdles in rare cancer research. Research doesn’t happen without support. Mesothelioma UK played a vital role in the recruitment process so I thank them for that.”
Simon added that ongoing studies at the Mesothelioma UK Research Centre at Sheffield University continue to advance understanding and care.
What gives you hope for patients and families affected by mesothelioma?
“The research space for mesothelioma is focused and dynamic and there is international collaboration. We are seeing continuing developments in supportive care and treatment. I would emphasise this to people living with the condition – we are looking to advance that support in care for people and their families – if you can look to the advances we are trying to make, that is what I would push for them to do.”
How would you advise patients and families to get involved?
“I would encourage anyone affected by mesothelioma to explore opportunities through Mesothelioma UK, connect with specialist nurses, engage with studies run through MURC (Mesothelioma UK Research Centre) and to join support groups, which many find empowering.”
What’s one message you’d like to give to the Mesothelioma community?
“Reach out for support where you can find it – to Mesothelioma UK, their nurses, healthcare professionals or family members. Tailoring the support to what suits you is important. You may find benefit by listening to others talk about their experience. There are also support groups which can be empowering for patients and carers.”
What has been the most rewarding part of doing this study for you personally?
“For me the study has been deeply meaningful, it’s an honour and privilege to share people’s stories and advocate for younger patients. Ensuring their experiences are represented in the research space is incredibly rewarding.”
Simon added to this sentiment, noting how strongly the findings reflect the changing patterns he sees in his practice, with more younger adults and women being diagnosed.
For further reading on Ben Lond’s research, visit: http://dx.doi.org/10.1155/ecc/6743766
More information for people caring for someone with mesothelioma is available, including information specifically for younger carers: https://www.mesothelioma.uk.com/for-carers/
