Incidence of peritoneal mesothelioma

A wealth of information can be found on the Mesothelioma UK website (www.mesothelioma.uk.com) or through asbestos support groups.

The latest National Mesothelioma Audit – published in 2020 - which collated data for the three 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 one third are female. The average age at diagnosis is also slightly younger, 71 compared with 76.

A higher proportion of women who go on to develop peritoneal mesothelioma, and the younger age profile, some women are being diagnosed in their 30s 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.

Support from the Basingstoke specialist team and HASAG

The depth of knowledge in the specialist team in Basingstoke and the counselling support offered by HASAG are a lifeline. There is a new mum in the peritoneal mesothelioma support group which shows 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 unsurprising 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 was only available for pleural mesothelioma. However, Nivolumab was available for later as a second line treatment for both pleural and peritoneal mesothelioma. Recent NICE approval of Ipi-Nivo applies to 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 UK nurse at Basingstoke, can 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. Sam was planning a Peritoneal Mesothelioma Patient and Carer Day in April 2020, but it had to be delayed because of the pandemic and instead went ahead in June 2022, it was a great success. In the thick of it all Sam 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.