When thinking about mesothelioma, people might also think about asbestos the most common cause; about black and white television adverts for asbestos floor tiles; that scene from the Wizard of Oz with the falling asbestos snow; and a time when asbestos was the ‘magical mineral’ – fire resistant, durable, and cheap!

It was in the last century, which saw widespread asbestos use in near everything and in every place. Today though, we correctly recognise the use of asbestos as one of the worst disasters in public health. Asbestos use was banned in 1999 after its links to mesothelioma and other conditions was confirmed. It is understandable then, that when thinking about mesothelioma and its links with past asbestos use, people may perceive mesothelioma as an ‘older person’s disease’ – as a cancer that only affects those who worked with asbestos many, many years ago.

It is true that most individuals diagnosed with mesothelioma are in their 70s and it is often possible to trace where they were exposed to asbestos, whether at work, in home settings, or elsewhere. For my great aunt, who died of mesothelioma in her 70s, it was unprotected asbestos panels in the roofing of the barn she had worked at long ago packing vegetables. She could recall the seemingly harmless dust falling whenever a tractor bumped into a barn wall. But alongside this truth, there is another truth: mesothelioma can also affect younger people.

Before joining the Mesothelioma UK Research Centre here at Sheffield, I had spent several years doing work for my PhD, interviewing individuals who were under the age of 60 and living with mesothelioma. The average age of people I spoke to was 45 years old. The youngest was aged just 26, and people can be diagnosed even younger than this.

In interviews, people talked about and provided photographs to help share their stories, of the unique challenges and ways of coping that younger people may experience this disease.

What did they say and what do their stories reveal?

At the time of the interviews, some people had only recently learned of their mesothelioma diagnosis. Others were diagnosed several years prior. Yet everyone recalled how difficult it was to be diagnosed. Often because they delayed seeking help for initial symptoms which they did not believe were serious. When they finally did seek help doctors could seem unsure or sceptical. Some ruled out mesothelioma; the person was too young and had no clear history of exposure to asbestos. Repeat tests, delays, and misdiagnosis were a very common feature. When people were diagnosed, they were beyond shocked! To be diagnosed with an asbestos related cancer, it did not make sense – it felt surreal, and awful.

After diagnosis and fatigue caused by clinical treatments, people talked about the longer-term impacts as worlds were turned upside down. Many had to leave their jobs, and reassess their lives and futures. The most common photographs that they shared were of their families; of young children and partners as they feared for their family’s future well-being. Individuals also discussed the psychological impacts. This included feelings of acute anxiety, of post-traumatic stress, disturbed dreams and disrupted sleep. These effects continued for many months or years long past the initial cancer diagnosis and treatment.

The takeaway message from this project: yes, mesothelioma typically affects older age-groups, but it impacts younger people too. While it is rarer among younger people, we should not see mesothelioma as a disease of the past which only affects older age individuals. As one of the people I spoke to put it: “I am the outlier on the graph”. All patients experience hard realities, and for younger people, this also means learning to live with an incurable condition that poses distinct challenges to their mental health, their family members, and plans for the future. Efforts are needed to help enhance ways of supporting younger people, to counter disease misconceptions, and broaden understandings that mesothelioma can impact individuals of any age.

If you want to read more about younger people’s experiences, the full article can be accessed free of charge here: The Psychological Impacts and Coping Strategies of People Under 60 Living with Mesothelioma Cancer. An online support group for younger people is also run by Mesothelioma UK, the details for which can be accessed here: Support Groups | Mesothelioma UK.

Benjamin Lond – Research Associate at the Mesothelioma UK Research Centre.