HASAG Asbestos Disease Support is dedicated to supporting people affected by Asbestos-related diseases in the South, South East, London and the Home Counties.
Mesothelioma is one of the 20 most common cancers for men in the UK. This is largely a reflection of the widespread historic use of asbestos in the UK in buildings and in industry, and historic traditional male occupations including shipbuilding, the railways and construction.
HSE statistics published earlier this year show that in 2018 the number of mesothelioma deaths in Great Britain remained static, when compared with the previous 6 years, at just under 2500. Sadly, the legacy of asbestos shows little sign of abating.
Most people who develop mesothelioma do so in the lungs, but it can also occur in the peritoneum (abdomen) the testicles and even occasionally the eyes. In this article I plan to explore the incidence of peritoneal mesothelioma, analyse who develops it, and what treatments and support are available. Anyone diagnosed with mesothelioma will find some of the treatment regimes and clinical trials apply to both pleural and peritoneal mesothelioma.
A wealth of information can be found on the mesothelioma uk website (www.mesothelioma.uk.com) or through support groups.
The latest National Mesothelioma Audit – published in 2020 – which collated data for the 3 years to 2018 found that during that time 3.6% of mesotheliomas diagnosed were in the peritoneum.
A higher percentage of women go on to develop peritoneal mesothelioma than men. Overall, 17% of mesothelioma diagnoses are in women, but for peritoneal patients over 1/3 are female. The average age at diagnosis is also slightly younger, 71 compared with 76.
Given the higher proportion of women who go on to develop peritoneal mesothelioma, and the younger age profile, some women are being diagnosed in their 30’s or even younger. Agonising decisions then often need to be made about the timing and range of treatment options, considering the impact on any wish to have a family. My heart totally goes out to anyone in this situation.
However, the depth of knowledge in the specialist team in Basingstoke and the counselling support offered by HASAG are a lifeline. There is also a new Mum in the peritoneal mesothelioma support group sometimes, so people can sometimes preserve their option to have children as well as have treatment for their mesothelioma.
Given how rare peritoneal mesothelioma is, it’s perhaps not surprising that some treatment and clinical trials are only available to those with pleural mesothelioma. For example, the first line immunotherapy regime ipilimumab and nivolumab (ipi-nivo) which was permitted through the Early Access to Medicines Scheme (EAMS) in the aftermath of the first wave of Covid 19 is only available for pleural mesothelioma. However, Nivolumab is available for later – second line – treatment for both pleural and peritoneal mesothelioma.
The difference in treatment options is possibly a reflection that some clinical trials possibly had to focus on the more common pleural mesothelioma. However, if you do find yourself confused about any treatment you would like to receive, Sam Westbrook – the specialist peritoneal mesothelioma nurse at Basingstoke may be able to advise. Sam is so very helpful. Despite working in Intensive Care and family support in COVID waves 1 and 2, the support offered at Basingstoke has continued to go from strength to strength in the last 12-18 months. Sam was planning a Peritoneal Mesothelioma Patient and Carer Day in April 2020, but it has had to be delayed for 2 years because of COVID. She ran a peritoneal breakout group as part of the Meso UK Patient and Carer day in October last year, and it was excellent. In the thick of the pandemic Sam has also established an excellent monthly virtual support group, which is always very well attended, and with a global reach!
Indeed, anyone diagnosed with peritoneal mesothelioma should consider pushing for a referral to Basingstoke to consider their treatment options. The specialist team there have revolutionised the care for many peritoneal mesothelioma patients in the last few years. They have an excellent track record of assessing patients’ suitability for radical surgery to “debulk” the tumour, and of successfully carrying out the surgery in appropriate cases. Indeed, surgery for peritoneal mesothelioma is more common than for pleural mesothelioma! The team at Basingstoke can oversee specialist chemotherapy and sometimes advise on what if any immunotherapy or other treatment might be available on the NHS.
An exciting new proposal to further improve the treatment options for peritoneal patients is also on the horizon. A collaboration between Mesothelioma UK, the Mavis Nye Foundation and HASAG means that funding for a PIPAC machine has been made available to the specialist team at Basingstoke. PIPAC stands for Pressurised IntraPeritoneal Aerosol Chemotherapy. In practice this means that the chemotherapy drug can be introduced to exactly where it is needed, in a move that will hopefully reduce side effects and result in improved results. PIPAC is minimally invasive surgery, and I understand it can be administered in an hour or so. PIPAC has shown promise for Bowel and Ovarian Cancer, and I have everything crossed that it will improve treatment for peritoneal mesothelioma as well.
It is so impressive what specialist charities can achieve with targeted funding and support. I take my hat off to HASAG, the lovely Mavis Nye and Mesothelioma UK, who work so tirelessly to support patients with peritoneal and pleural mesothelioma, and to improve their treatment options and support.
It’s Action Meso Day on July 2nd. This is one of the important awareness raising and fundraising events of the year. Full details can be found at www.actionmeso.org. The events are virtual again this year, but keeping everything crossed we can all see each other in person again soon!!
Helen Childs is a solicitor who specialises in asbestos and mesothelioma.
Useful contacts :-
Sam Westbrook – can be contacted through Meso UK on 0800 169 2409 or www.mesothelioma.uk.com email firstname.lastname@example.org
HASAG – www.hasag.co.uk 02380 010015
Mavis Nye Foundation www.mavisnyefoundation.com