Building Your Team and Living with MPM

Because Malignant Peritoneal Mesothelioma (MPM) is so rare, your care should not be managed by a generalist. Success in treating this disease is highly dependent on the expertise of your medical team and the volume of cases your hospital handles.

Building Your Multidisciplinary Team

According to the Chicago Consensus, a high-quality care team for MPM should be “multidisciplinary,” meaning it includes specialists from different fields who meet regularly to discuss your case ^[1].

• Surgical Oncologist: Specifically one who specializes in Peritoneal Surface Malignancies (PSM) and has extensive experience in CRS and HIPEC.
• Medical Oncologist: An expert who stays current on the latest immunotherapy (like Ipilimumab/Nivolumab) and chemotherapy protocols ^[1].
• Specialized Pathologist: Mesothelioma is notoriously hard to diagnose; you need a pathologist who regularly uses the full immunohistochemistry (IHC) panel to confirm the diagnosis ^[1].
• Oncology Nutritionist: Major abdominal surgery significantly impacts your digestion. A dietitian can help you manage your diet during the 6-to-12-month recovery period ^[1].
• Genetic Counselor: Since up to 17% of patients have an inherited risk (like a germline BAP1 mutation), a counselor is essential to help interpret your pathology and arrange testing ^[1].

Vetting Your Surgeon

You have the right to ask tough questions. Research shows that outcomes for CRS and HIPEC are better at “high-volume” centers. Experts often suggest that a center should perform at least 15 to 20 of these procedures annually to maintain high standards of safety and success ^[1].

Don’t be afraid to ask:

• How many CRS/HIPEC procedures do you perform annually?
• What are your personal rates for major complications or ICU stays?
• What do you estimate my PCI score to be, and how confident are you in achieving a complete cytoreduction?

Managing Daily Symptoms Before Treatment

Many patients experience ascites (fluid buildup in the abdomen) early in their diagnosis. This can cause severe bloating, discomfort, and shortness of breath ^[1]. Before or during treatment, your doctor can manage this symptom with a paracentesis—a procedure where a needle is used to drain the excess fluid, providing immediate, temporary relief.

Post-Treatment Surveillance: What to Expect

Once your initial treatment is complete, you will enter a “surveillance” phase. The goal is to catch any recurrence early when it is most treatable.

• Imaging: You will likely have a high-quality CT or MRI of the abdomen and pelvis every 3 to 6 months for the first two years, then once a year after that ^[1].
• Tumor Markers: Your doctor may monitor blood levels of CA-125. While not perfect, if this marker was high before your surgery, it can be a helpful indicator to monitor for the cancer’s return ^[1].
• Scan Anxiety: It is normal to feel significant anxiety before these appointments (often called “scanxiety”). Many patients find it helpful to schedule their follow-up appointments with a specialized oncology counselor or support group.

Living as a Survivor

The recovery from CRS and HIPEC is a marathon, not a sprint. Most patients report that it takes 6 to 12 months to return to their baseline level of energy and physical function ^[1].

• Digestive Changes: You may experience temporary or permanent changes in how you digest food, including bloating or changes in bowel habits.
• Fatigue: This is the most common long-term side effect. It is often managed through “pre-habilitation” (strengthening your body before surgery) and gradual physical therapy afterward.
• Quality of Life: Despite the intensity of the treatment, studies show that many survivors of MPM report a good quality of life and a return to their normal activities once the initial recovery phase has passed ^[1].