Getting a Second Opinion for Mesothelioma

Key Points

Fact	Detail
Misdiagnosis rate	Up to 30-40% initially
Time to confirm diagnosis	Days to weeks (worth it)
Cost	Often covered by insurance
Benefit	Different diagnosis, different treatment options
Recommendation	Every mesothelioma patient should get one

Mesothelioma is one of the most commonly misdiagnosed cancers. Getting a second opinion from a specialist isn’t just recommended, it’s essential for ensuring accurate diagnosis and optimal treatment.

Why Mesothelioma Patients Need Second Opinions

High Misdiagnosis Rates

Challenge	Impact
Rarity	Most doctors see few cases
Similar appearance	Looks like other cancers under microscope
Varied presentation	Symptoms mimic common conditions
Limited local expertise	Community hospitals lack specialists

Mesothelioma represents fewer than 1% of all cancers, meaning most oncologists have limited experience with the disease.

Common Misdiagnoses

Mesothelioma is frequently confused with:

Condition	Similarity
Lung adenocarcinoma	Most common misdiagnosis
Other metastatic cancers	Can appear similar on imaging
Reactive mesothelial cells	Benign vs. malignant determination
Sarcoma	Especially sarcomatoid mesothelioma

Consequences of Misdiagnosis

Wrong Diagnosis	Consequence
Lung cancer (not meso)	Wrong chemotherapy regimen
Benign condition	Delayed treatment
Different cancer	Inappropriate surgery
Wrong cell type	Suboptimal treatment plan

Types of Second Opinions

1. Pathology Review

What It Is	Why It Matters
Expert re-examines tissue slides	Confirms cell type, diagnosis
Specialized immunohistochemistry	Distinguishes mesothelioma from other cancers
Molecular testing	Identifies treatment-relevant markers

This is the most important second opinion for mesothelioma patients.

2. Clinical Second Opinion

What It Is	Why It Matters
Different oncologist reviews case	Fresh perspective on treatment
Imaging re-interpretation	May see something missed
Treatment recommendations	May suggest different approach

3. Surgical Opinion

What It Is	Why It Matters
Thoracic surgeon evaluates	Determines if surgery is option
Discusses surgical approaches	P/D vs. EPP considerations
Assesses operability	Some cases more operable than thought

How to Get a Second Opinion

Step 1: Gather Your Records

Documents Needed	Purpose
Pathology report and slides	For expert review
Imaging (CT, PET, MRI)	Shows disease extent
Surgical/biopsy reports	Documents what was done
Treatment history	What’s been tried
Lab results	Overall health status

Important: Request actual tissue slides, not just the report. Specialist pathologists need to see the tissue.

Step 2: Identify Specialist Centers

Type of Center	Examples
NCI-designated cancer centers	MD Anderson, Memorial Sloan Kettering
Major academic medical centers	Mayo Clinic, Cleveland Clinic
Mesothelioma specialty programs	Brigham and Women’s, PENN
High-volume thoracic surgery centers	Baylor, UCLA

Step 3: Make the Appointment

Method	Process
Self-referral	Many centers accept direct patient contact
Physician referral	Your doctor sends referral
Online portal	Some centers have online appointment requests
Patient navigator	Specialty centers have staff to help

Step 4: Prepare for the Visit

Preparation	Benefit
List of questions	Don’t forget important topics
Family member/advocate	Second set of ears
Current medication list	Important for treatment planning
Symptom diary	Helps communicate your experience

Questions to Ask During Second Opinion

About Diagnosis

Question	Why Ask
Do you agree with the diagnosis?	Confirms or challenges initial assessment
What cell type is it?	Affects treatment and prognosis
What stage?	Determines treatment options
Did you review the tissue yourself?	Ensures thorough evaluation

About Treatment

Question	Why Ask
What treatment do you recommend?	May differ from initial plan
Am I a candidate for surgery?	Surgical centers may offer options
What clinical trials are available?	Specialist centers have more trials
What is the expected outcome?	Realistic prognosis discussion

About the Center

Question	Why Ask
How many mesothelioma patients do you treat yearly?	Experience matters
Do you have a multidisciplinary team?	Best care involves multiple specialists
What clinical trials are you running?	Access to newest treatments

Finding Mesothelioma Specialists

Major Mesothelioma Centers

Region	Notable Centers
Northeast	Brigham and Women’s, Memorial Sloan Kettering, Penn
Southeast	Moffitt Cancer Center, MD Anderson
Midwest	University of Chicago, Mayo Clinic
West	UCLA, Stanford, UCSF
Texas	Baylor, MD Anderson

What Makes a Specialist

Qualification	Importance
Treats 20+ mesothelioma patients/year	Experience matters
Multidisciplinary team	Comprehensive care
Active in research	Access to newest treatments
Published in mesothelioma	Demonstrates expertise
Offers clinical trials	Treatment options

Costs and Insurance

Insurance Coverage

Situation	Typical Coverage
In-network specialist	Usually covered
Out-of-network specialist	May be covered with prior authorization
Pathology review	Often covered
Remote/virtual consultation	Increasingly covered

If Insurance Doesn’t Cover

Option	Detail
Appeal denial	Often successful with documentation
Patient assistance programs	Many centers offer financial help
Travel grants	Some organizations help with travel
Virtual second opinions	Often less expensive

Remote Second Opinions

Telepathology

Feature	Benefit
Ship tissue slides	Expert review without travel
Digital slide scanning	Enables remote microscopy
Written report	Detailed analysis
Consultation call	Discuss findings

Virtual Clinical Consultations

Feature	Benefit
Video visit	Face-to-face without travel
Record review	Expert reviews your case
Treatment recommendations	Written plan provided
Follow-up as needed	Ongoing guidance available

What If Opinions Differ?

When Diagnoses Disagree

Situation	Action
One says mesothelioma, one says different cancer	Seek third opinion
Same diagnosis, different cell type	Request additional testing
Same diagnosis, different stage	May need additional imaging

When Treatment Recommendations Differ

Situation	Considerations
One recommends surgery, one doesn’t	Discuss with both; consider a third opinion
Different chemotherapy recommendations	Ask each to explain reasoning
Clinical trial suggested by one	Seriously consider, may be best option

Your Rights

You Have the Right To

Right	Application
Request records	Including tissue slides
Get a second opinion	Insurance must allow
Choose your treatment	After understanding options
Refuse treatment	Informed decision
Ask questions	Until you understand

Your Doctor Should

Expectation	Reality
Support your decision	Most do
Provide records promptly	Required by law
Not take it personally	It’s about your life
Coordinate care	Work with specialists

Related Articles

• Mesothelioma Diagnosis Explained
• Mesothelioma Treatment Options
• Mesothelioma Clinical Trials
• Mesothelioma Cell Types