The first 60 days: Peritoneal mesothelioma
Peritoneal mesothelioma grows in the lining of the abdomen, causing swelling, pain and fluid. Unlike its pleural cousin it is often treated with major surgery to strip the lining followed by heated chemotherapy washed through the abdomen, which can give long survival in fit patients with epithelioid disease. Below, week by week, is what OnCo's record of Peritoneal mesothelioma says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
CT, laparoscopy with biopsy and scoring of disease extent; germline BAP1 testing when young or with a family history.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Diagnosis, Indolent variants.
- RadiologistNamed in the standard of care for: Diagnosis.
- SurgeonNamed in the standard of care for: Resectable epithelioid disease, fit patient, Indolent variants.
- Medical oncologistNamed in the standard of care for: Resectable epithelioid disease, fit patient, Unresectable or unfit, Indolent variants.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Cytoreductive surgery with HIPEC in an experienced centre; long-term survival in a substantial fraction.
Platinum-pemetrexed chemotherapy; nivolumab plus ipilimumab or pembrolizumab combinations extrapolated from pleural trials and small peritoneal series.
Well-differentiated papillary and multicystic tumours: surgical removal and surveillance; systemic therapy rarely needed.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example Histology and peritoneal cancer index at laparoscopy, BAP1 loss, Ki-67, Completeness of cytoreduction score), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Epithelioid, Biphasic and sarcomatoid, Well-differentiated papillary mesothelial tumour.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Diagnosis
- For my situation (diagnosis), which of the standard options do you recommend and why?Guideline options include: CT, laparoscopy with biopsy and scoring of disease extent; germline BAP1 testing when young or with a family history.
Resectable epithelioid disease, fit patient
- For my situation (resectable epithelioid disease, fit patient), which of the standard options do you recommend and why?Guideline options include: Cytoreductive surgery with HIPEC in an experienced centre; long-term survival in a substantial fraction.
Unresectable or unfit
- For my situation (unresectable or unfit), which of the standard options do you recommend and why?Guideline options include: Platinum-pemetrexed chemotherapy; nivolumab plus ipilimumab or pembrolizumab combinations extrapolated from pleural trials and small peritoneal series.
- Am I a candidate for Pemetrexed, Nivolumab, Ipilimumab or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Indolent variants
- For my situation (indolent variants), which of the standard options do you recommend and why?Guideline options include: Well-differentiated papillary and multicystic tumours: surgical removal and surveillance; systemic therapy rarely needed.
Any stage
- Are there clinical trials I could join, for example of Antibody-drug conjugates for mesothelioma: why they have failed so far and how they could work?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “No randomised trial has compared surgery plus HIPEC with systemic therapy”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Selection for surgery relies on centre experience rather than validated criteria”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Peritoneal mesothelioma: the full pagePeritoneal mesothelioma grows in the lining of the abdomen, causing swelling, pain and fluid. Unlike its pleural cousin it is often treated with major surgery to strip the lining followed by heated chemotherapy washed through the abdomen, which can give long survival in fit patients with epithelioid disease.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.