How to Find a Mesothelioma Specialist: A Caregiver Guide
Most general oncologists see only a handful of mesothelioma cases in their entire career. A specialist who treats mesothelioma every week will know the surgical options, clinical trials, and second-line treatments that a generalist may not. This guide explains how to find one — and what to ask before your first visit.
If you'd like help shortlisting a specialist near you, our Patient Advocates can talk through your situation in plain language. Call 1-800-877-6000 — 24/7, free, no obligation.
Why a specialist matters
Mesothelioma is rare — about 3,000 new diagnoses each year in the United States. That rarity matters because the surgeons who do the most mesothelioma cases tend to get better outcomes than those who do only a few each year. It also matters because the available treatments are evolving quickly. Immunotherapy combinations approved in the last few years, multimodal therapy protocols, and clinical trials for pleural and peritoneal mesothelioma are concentrated at a small number of cancer centers.
A specialist consultation is almost always worth the trip — even if you ultimately get treatment closer to home. A specialist will confirm the diagnosis (mesothelioma is sometimes mis-typed as lung cancer or another cancer), stage the disease accurately, and lay out the realistic options.
Four things to verify before you book
- Is this an NCI-designated cancer center? The National Cancer Institute (NCI) designates a small number of U.S. cancer centers (currently 72) as research-intensive comprehensive centers. Most specialized mesothelioma programs are at one of these.
- Does the program treat mesothelioma specifically? "Treats lung cancer" is not the same as "treats mesothelioma." Look for a program page or clinic name that uses the word mesothelioma.
- Surgical sub-specialty: P/D or EPP? Pleurectomy/decortication (P/D) and extrapleural pneumonectomy (EPP) are very different surgeries. Today, most U.S. specialists prefer P/D when possible. Ask which the surgeon does.
- Open clinical trials? A specialist program will know which trials are recruiting and whether you might be eligible. This can open up treatment options not available outside the trial.
NCI-designated centers with mesothelioma programs
The institutions below are NCI-designated cancer centers that publicly list a mesothelioma program or thoracic oncology service that treats mesothelioma. Phone numbers are each center's main patient line — they will route you to the right intake team.
Memorial Sloan Kettering Cancer Center
New York, NY
Mesothelioma Program — runs a multidisciplinary clinic combining thoracic surgery, medical oncology, and radiation.
Dana-Farber Cancer Institute / Brigham and Women's Hospital
Boston, MA
International Mesothelioma Program — one of the longest-running specialized mesothelioma programs in the world.
MD Anderson Cancer Center
Houston, TX
Mesothelioma Program in the Department of Thoracic and Cardiovascular Surgery.
University of Pennsylvania — Penn Medicine
Philadelphia, PA
Penn Mesothelioma and Pleural Disease Program — pioneers of immunotherapy and photodynamic therapy research.
Mayo Clinic
Rochester, MN
Mesothelioma multidisciplinary team across thoracic surgery, medical oncology, radiation oncology, and pulmonology.
Cleveland Clinic
Cleveland, OH
Mesothelioma Program in the Taussig Cancer Institute.
University of Chicago Medicine
Chicago, IL
Mesothelioma Program — known for its work on peritoneal mesothelioma and HIPEC.
Moffitt Cancer Center
Tampa, FL
Thoracic Oncology Program with mesothelioma sub-specialty in surgery and clinical trials.
Johns Hopkins Sidney Kimmel Comprehensive Cancer Center
Baltimore, MD
Thoracic oncology team treats pleural mesothelioma; peritoneal mesothelioma handled by surgical oncology.
Fred Hutchinson Cancer Center
Seattle, WA
Thoracic and head/neck surgery program with mesothelioma sub-specialty across the UW/Fred Hutch network.
Duke Cancer Institute
Durham, NC
Thoracic Oncology Program with research in immunotherapy for mesothelioma.
University of California, Los Angeles (UCLA) Health
Los Angeles, CA
Mesothelioma Program in the Division of Thoracic Surgery — multidisciplinary clinic.
AdventHealth Orlando
Orlando, FL
Thoracic surgery program led by Dr. Marcelo C. DaSilva, MD, FACS, FICS — MesoCare's Senior Medical Reviewer. Specializes in pleurectomy/decortication (P/D) and multimodal therapy.
Our Senior Medical Reviewer: Dr. Marcelo C. DaSilva
MesoCare's clinical content is reviewed by Marcelo C. DaSilva, MD, FACS, FICS, a board-certified thoracic surgeon at AdventHealth Orlando. Dr. DaSilva specializes in pleurectomy/decortication (P/D) and multimodal therapy for pleural mesothelioma. He has trained at and contributed to several of the programs listed above.
If you'd like a second-opinion consultation with Dr. DaSilva's program at AdventHealth Orlando, our Patient Advocates can help arrange the intake. We can also help with travel logistics and connect you to grants that may cover specialist-visit travel costs.
Read Dr. DaSilva's full bio →What to ask at the first appointment
Caregivers tell us the first appointment goes by fast. Bring a notebook (or a second pair of ears) and ask:
- What type of mesothelioma is this — pleural, peritoneal, pericardial, or testicular? What cell type (epithelioid, sarcomatoid, biphasic)?
- What stage are we looking at, and how was that determined?
- Is surgery an option here? If yes, P/D or EPP — and why?
- What does the standard treatment plan look like — chemotherapy, immunotherapy, radiation, or a combination?
- Are there clinical trials open at this institution that might fit?
- Should we get a second opinion at another NCI-designated center?
- Who on the care team is our point of contact for questions between visits?
Our Caregiver Tools page has a printable version of these questions, plus a treatment-discussion guide.
How to pay for specialist care
A specialist consultation, surgery, and travel can add up fast. Several paths can help with the cost:
- Asbestos trust funds: Trust-fund claims often pay within a few months and don't require a lawsuit. They can cover specialist visits, surgery, travel, and lodging.
- VA benefits: Veterans diagnosed with service-connected mesothelioma can receive specialist care through the VA, often at one of the centers above through community-care referrals.
- Medicare and Medicaid: Both cover most NCI-designated cancer centers. Confirm in-network status with the center's intake team.
- Travel and lodging programs: Many cancer centers participate in the American Cancer Society's Hope Lodge program (free housing for patients in active treatment). Mesothelioma-specific travel grants are listed on our Financial Assistance page.
A 5-minute call with our Patient Advocates can usually clarify which paths apply to your family. Call 1-800-877-6000 any time.
Common questions
Do I have to travel to one of these centers?
A second-opinion consultation is usually worth the trip. Many families have the consultation at an NCI center and then return home for ongoing chemotherapy, with the specialist coordinating with the local oncologist. Some specialists also offer telehealth second opinions.
How do I get my records to a specialist quickly?
Every specialist's intake team can guide you through this — usually a HIPAA release that authorizes the new center to pull records, imaging, and pathology slides directly from your current providers. Pathology slides (not just the report) are particularly important; the specialist's pathologist will often re-read them.
Is there a cost for the second opinion itself?
Most second opinions are billed to insurance like any other specialist consultation. Confirm coverage with your insurance and the center's billing team before the visit. If cost is a barrier, our Patient Advocates can connect you to grants and trust-fund options that often cover this.
What if my loved one is too sick to travel?
Several centers offer telehealth second opinions where the specialist reviews records and imaging remotely and meets with the family by video. Our telehealth guide has more on this.
A MesoCare service. Calls answered 24/7 by Danziger & De Llano, sponsor. No obligation. Medical content reviewed by Marcelo C. DaSilva, MD, FACS, FICS. Clinical content reviewed by Eleanor Ericson, RN, BSN and Lisa Hyde Barrett, RN, BSN (Nursing Liaisons).