Appointment sheet
Peritoneal mesothelioma
Prepared with OnCo (onco.cc/prep/peritoneal-mesothelioma/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
14 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.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?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis
- 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Resectable epithelioid disease, fit patient
- 6.For my situation (resectable epithelioid disease, fit patient), which of the standard options do you recommend and why?
Unresectable or unfit
- 7.For my situation (unresectable or unfit), which of the standard options do you recommend and why?
- 8.Am I a candidate for Pemetrexed, Nivolumab, Ipilimumab or related drugs, and what side effects should I expect?
Indolent variants
- 9.For my situation (indolent variants), which of the standard options do you recommend and why?
Any stage
- 10.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?
- 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 13.I read that “No randomised trial has compared surgery plus HIPEC with systemic therapy”. How does that affect my plan?
- 14.I read that “Selection for surgery relies on centre experience rather than validated criteria”. How does that affect my plan?
The words I may hear
- Peritoneal cancer index: The peritoneal cancer index is the score a surgeon gives the abdomen at operation, region by region, for how much tumour is on its lining.
- Cytoreductive surgery: Cytoreductive surgery is an operation that strips every visible tumour deposit from the lining of the abdomen and from the organs it coats, often taking many hours.
- BAP1 loss: BAP1 is a tumour-suppressor gene that mesothelioma, uveal melanoma and clear-cell kidney cancer lose more often than any other; a lost nuclear stain on the biopsy confirms cancer over a benign look-alike in mesothelioma, marks the metastasis-prone half of eye melanomas, and, when inherited, defines a family syndrome of all three.
- CDKN2A/B homozygous deletion: Losing both copies of the CDKN2A/B genes on chromosome 9p21 removes the cell's main brake on division; in an IDH-mutant glioma it alone makes the tumour grade 4, in mesothelioma and melanoma it marks aggressive disease, and the neighbouring MTAP gene usually goes with it, opening a new drug target.
Tests and results to bring
Diagnosis: CT, laparoscopy with biopsy and scoring of disease extent; germline BAP1 testing when young or with a family history.
Biomarker results to ask for: Histology and peritoneal cancer index at laparoscopy, BAP1 loss (somatic and germline), Ki-67 (prognostic after surgery), Completeness of cytoreduction score.
Scans and tests linked to this cancer: Active surveillance.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable epithelioid disease, fit patient: Cytoreductive surgery with HIPEC in an experienced centre; long-term survival in a substantial fraction. (HIPEC / PIPAC (intraperitoneal chemotherapy))
- Unresectable or unfit: Platinum-pemetrexed chemotherapy; nivolumab plus ipilimumab or pembrolizumab combinations extrapolated from pleural trials and small peritoneal series. (Pemetrexed, Nivolumab, Ipilimumab, Pembrolizumab)
- Indolent variants: Well-differentiated papillary and multicystic tumours: surgical removal and surveillance; systemic therapy rarely needed. (Active surveillance)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call