Comment: Malignant looking right-sided pleural disease, for which the differential lies between primary mesothelioma (which seems unlikely in a patient of this age), and metastatic disease.
‘NB Whenever I have seen the comment “seems unlikely in this patient because...” written in a radiology report, then that differential turns out to be the correct diagnosis…’
This is from a blog written by the eminent sexual health consultant Mags Portman, who died this year, aged 44. She had been diagnosed with mesothelioma – a cancer caused almost exclusively by exposure to asbestos – two years before that.
The quote above is taken from the report of the CT scan that formed part of the diagnosis process; the wry comment that follows is characteristic of someone who charted her experience of terminal cancer with admirable candour and even humour.
Dr Portman, who was lauded internationally for her role in making pre-exposure prophylaxis available to people with HIV, is one of a small but significant number of doctors and other healthcare workers who have fallen victim to this particularly aggressive form of cancer.
Her husband, Martin Portman, believes she was exposed to asbestos when she was a junior doctor working at Law Hospital in South Lanarkshire.
‘At that time it was a former army barracks, mainly constructed from Nissen huts with asbestos products throughout the whole site,’ he says.
Mesothelioma is a rare cancer, with around 2,500 diagnoses in the UK each year. According to Mesothelioma UK, nine in 10 cases are linked to exposure to asbestos. Although this traditionally occurred in industrial settings – such as construction work – workers in other occupations can also be affected.
‘Mesothelioma is indiscriminate,’ says Ian Toft, a partner with law firm Irwin Mitchell, and head of the asbestos-related disease team in Leeds.
‘It can affect everybody. Asbestos is in lots of public buildings, including schools, libraries – and hospitals – and although it’s been banned for around 20 years, so you shouldn’t get it in newer buildings, there’s still a lot of it around.’
Healthcare workers including doctors who develop mesothelioma tend to have been victims of what is called ‘bystander exposure’ – because they haven’t handled it as a direct part of their jobs but they were in an environment where asbestos was disturbed.
This means it’s very hard to pursue claims because doctors understandably don’t remember every occasion where they might have been around, for example, when construction or maintenance work was going on in the background.
It was a massive, massive shock. It took such a while for it to sink in.
‘One of the difficulties is that it’s such a long period of time between potential exposure and developing mesothelioma that it really tests your memory,’ says Mr Portman, who is pursuing a case started by his late wife.
‘Mags felt the onus was on her to remember specific occasions when there was work going on, which of course would have been incidental to her reason for being there. There’s quite a lot of pressure on potential claimants to come up with detailed evidence when you’re going back that far.’
Dr Portman was diagnosed in January 2017 after seeking medical attention for symptoms including a persistent cough.
‘She was slightly concerned – being medically trained she knew what the potential outcomes might be,’ says Mr Portman, who works in healthcare IT. ‘She had a chest X-ray and then was told to come back immediately and have a CT scan.
‘She knew then that something serious was likely to be the outcome of this, but I think the rest of the family and those around her were probably in a state of disbelief. It was so unlikely that you just simply wouldn’t expect it. Even the care professionals were surprised by the diagnosis; they didn’t want to believe it until it was proven by biopsy.’
Asbestos is in lots of public buildings, including schools, libraries and hospitals.
‘We’d never worked with it’
Obviously, the diagnosis had a huge effect on the family, especially on their sons, then aged six and nine.
‘It was a massive, massive shock. It took such a while for it to sink in. Myself and Mags went through various stages of near-panicking. Not only was it shocking because of the seriousness of it, and we didn’t know how long Mags had to live – it could have been just a few months – but also wondering where it had come from. I mean asbestos – we’d never worked with it. Mags had the house tested because this stuff is deployed in different places in different forms.’
For a period of around six weeks, the couple were ‘emotionally turned inside out’, he says. They told the boys as soon as they could.
‘They knew there was a problem before diagnosis and when Mags was diagnosed with cancer (although at that time we didn’t know what type) we told them that she had cancer. When we knew it was mesothelioma we told them, and we told them that she was expected to die.’
Despite everything they were going through, the family managed to have some good times in the months that lay ahead.
‘We were really close anyway, but this ironically really did bring us together as a family. Mags was asking the question, “what good can you get out of cancer?” almost, and we did have a good family time if you can separate out the awful cancer bit from us just having time together as a family.’
Dr Portman’s death was reported to the coroner’s office in England so there is likely to be an inquest. Lawyers Irwin Mitchell are investigating the case, which Mr Portman (pictured below) hopes will have several positive outcomes.
‘Although Mags didn’t feel unduly angry about what happened, there’s a sense of injustice; this is an avoidable death,’ he says. ‘She worked in an area of medicine that was preoccupied by prevention, and yet she had a terminal diagnosis from something that was preventable.’
He would like to see more awareness raising about the risks to healthcare workers of exposure to asbestos.
‘Mags really blundered into a situation because she went to work and assumed she was safe. There was no way that she knew there might be a safety problem there. I know that hospitals and other public buildings have to keep an asbestos register but this is information that is generally hidden away. Maybe it should be more widely circulated so that people can find it more readily and maybe it would inform their choices about where to work.’
And there is no doubt that asbestos is still in many, many healthcare buildings across the UK. A BBC investigation last year found out (via requests under the Freedom of Information Act) that around nine in 10 hospital trusts in England knew of asbestos in at least some of their buildings.
Claims are beginning to have a financial effect on the NHS. A Freedom of Information request to NHS Resolution demonstrated that there had been 1,229 related claims submitted since 2004, with about half settled in favour of the employee.
Back in Leeds, life goes on for Mr Portman and sons Edward and Freddie.
‘At the moment, I think we’re kind of doing OK,’ he says. ‘Telling the boys that Mags had died was absolutely the worst thing I’ve ever had to do, but I think they’ve coped really, really well.
'They miss her terribly and will often say that they miss her and are thinking about her, but they’re getting on with their lives.’
He pauses for a moment, then adds thoughtfully: ‘They’re enjoying themselves when they should be enjoying themselves. They’re looking to the future. Edward – our oldest boy – has just started secondary school and it’s a big school with lots to do, and he’s coming home and being very enthusiastic demonstrating what he’s been finding out. It very much reminds me of Mags, actually. What’s happened hasn’t held them back from being inspired by things.’
Risk-awareness research under way
Mesothelioma UK is funding research to explore the experience of healthcare workers with mesothelioma with the aim of developing recommendations for increasing awareness of the risk to this group.
Called the MAGS study (Healthcare Workers Mesothelioma Asbestos Guidance) in honour of Mags Portman, it has been paid for partly by donations from her friends and family.
Researcher Peter Allmark, who is based at Sheffield Hallam University, says the research is largely qualitative and seeks to find out the experiences that healthcare workers have with mesothelioma, including how they feel treated by other healthcare workers.