๐Ÿ” Getting a Second Opinion

A second opinion is standard of care for brain tumors. Top centers see more cases and may offer different treatment options or clinical trials.

โ“ Why Get a Second Opinion?

Getting a second opinion isn't about distrust โ€” it's about making sure you have the best information for important decisions:

  • Treatment options vary: Different centers may recommend different approaches based on their expertise and available trials
  • Clinical trials: Major centers have access to cutting-edge treatments not available elsewhere
  • Surgical expertise: Surgeons at high-volume centers often achieve better outcomes
  • Pathology review: Tumor diagnosis and molecular testing can affect treatment โ€” having an expert center review is valuable
  • Peace of mind: Confirming the diagnosis and treatment plan helps you move forward with confidence
โœ“ Studies show: Second opinions change the diagnosis or treatment plan in 10-50% of cancer cases. For complex brain tumors, the number may be even higher.

๐Ÿฅ Top GBM Treatment Centers

These centers have dedicated neuro-oncology programs, high case volumes, and active clinical trial programs:

Duke Brain Tumor Center

๐Ÿ“ Durham, North Carolina

Pioneered many GBM treatments including polio virus therapy. Very active clinical trial program.

Phone: (919) 684-5301

Visit Website โ†’ Immunotherapy

UCSF Brain Tumor Center

๐Ÿ“ San Francisco, California

One of the largest programs in the US. Strong emphasis on molecular characterization and personalized treatment.

Phone: (415) 353-2966

Visit Website โ†’ Surgical Excellence

MD Anderson Cancer Center

๐Ÿ“ Houston, Texas

Largest cancer center in the US. Comprehensive neuro-oncology program with extensive trials.

Phone: 1-877-632-6789

Visit Website โ†’ Comprehensive Care

Dana-Farber Cancer Institute

๐Ÿ“ Boston, Massachusetts

Part of Harvard medical system. Strong research program and clinical trials.

Phone: (617) 632-3000

Visit Website โ†’ Research Leader

Mayo Clinic

๐Ÿ“ Rochester, MN / Phoenix, AZ / Jacksonville, FL

Three locations. Known for coordinated multidisciplinary care and diagnostic expertise.

Phone: (507) 284-2511

Visit Website โ†’ Multidisciplinary

Memorial Sloan Kettering

๐Ÿ“ New York, New York

Leading cancer center with extensive brain tumor program and clinical trials.

Phone: (212) 639-2000

Visit Website โ†’ Clinical Trials

Cleveland Clinic

๐Ÿ“ Cleveland, Ohio

Top-ranked neurology and neurosurgery departments. Intraoperative MRI capabilities.

Phone: (216) 444-8500

Visit Website โ†’ Neurosurgery

Johns Hopkins

๐Ÿ“ Baltimore, Maryland

Historic brain tumor program. Leading research including mebendazole trials.

Phone: (410) 955-8964

Visit Website โ†’ Drug Repurposing

Other Excellent Centers

  • UCLA Brain Tumor Center โ€” Los Angeles, CA
  • Northwestern Medicine โ€” Chicago, IL
  • University of Pittsburgh Medical Center โ€” Pittsburgh, PA
  • University of Washington/Fred Hutch โ€” Seattle, WA
  • Moffitt Cancer Center โ€” Tampa, FL
  • Stanford Medicine โ€” Palo Alto, CA
  • Penn Medicine โ€” Philadelphia, PA
๐Ÿ’ก How to choose: Consider location, specific expertise (some centers lead in certain approaches), available clinical trials, and whether your insurance is accepted. A center doesn't have to be "the best" โ€” it needs to be the best for YOUR specific situation.

๐Ÿ“‹ How to Get a Second Opinion

Request Your Medical Records

You have a legal right to your records. You'll need:

  • Pathology slides โ€” The actual tumor tissue (not just the report)
  • Imaging โ€” MRI scans on CD/DVD (not printed images)
  • Reports โ€” Pathology, radiology, operative notes, clinic notes
  • Lab work โ€” Blood tests, molecular testing results

Contact your hospital's medical records department. Allow 1-2 weeks for processing.

Choose Where to Go

Consider:

  • Centers with specific expertise for your tumor type
  • Distance and ability to travel
  • Insurance coverage
  • Available clinical trials

Make an Appointment

Call the center's brain tumor or neuro-oncology department. Be prepared to:

  • Explain your diagnosis and current treatment status
  • Ask about wait times (mention urgency if needed)
  • Confirm what records they need in advance
  • Verify insurance coverage

Many centers have coordinators specifically for second opinions.

Send Records in Advance

Most centers want records 1-2 weeks before your appointment so they can:

  • Have their pathologists review your tumor slides
  • Have their radiologists review your MRI
  • Prepare a thoughtful opinion

Attend Your Appointment

Bring everything on the checklist below. Take notes or record the conversation (ask permission first).

๐Ÿ’ป Telemedicine Options

Can't travel? Many major centers offer virtual second opinions:

Cleveland Clinic MyConsult

Online second opinion program. Review of your case by specialists.

Learn More โ†’

Dana-Farber Online

Virtual consultations available for new patients.

Learn More โ†’

MD Anderson Remote Opinion

Expert review of diagnosis and treatment recommendations.

Learn More โ†’

Mayo Clinic Online

Ask Mayo Expert โ€” online second opinions from Mayo specialists.

Learn More โ†’
โš ๏ธ Telemedicine limitations: Virtual opinions can review records and provide recommendations, but cannot do a physical exam or offer the same level of assessment as an in-person visit. Still very valuable for confirming diagnosis and treatment plan.

๐Ÿ“ What to Bring to Your Appointment

  • MRI scans on CD/DVD (all scans, not just most recent)
  • Pathology slides (actual tissue, not just report)
  • Pathology report including molecular testing
  • Operative report (if surgery was done)
  • Radiology reports
  • Current medication list
  • Medical history summary
  • Insurance cards
  • Photo ID
  • List of questions you want to ask
  • Notebook for notes (or ask permission to record)
  • A support person (family member or friend)
๐Ÿ’ก Request records early: Getting pathology slides can take time. Start the process as soon as you decide to seek a second opinion.

โ“ Questions to Ask

About Diagnosis

  • Do you agree with the diagnosis after reviewing the pathology?
  • What is the grade and molecular profile of my tumor?
  • Is MGMT methylation testing complete? What does it mean for me?
  • Is IDH mutation testing complete?

About Treatment

  • What treatment approach do you recommend and why?
  • How does this differ from what I was previously told?
  • What are the expected benefits and risks?
  • Are there clinical trials I should consider?
  • What is your experience treating tumors like mine?

About Surgery (if relevant)

  • How much of the tumor can be safely removed?
  • What surgical techniques do you use (awake surgery, intraoperative MRI)?
  • How many of these surgeries have you performed?
  • What are the risks of neurological damage?

About Prognosis

  • What is the expected prognosis with treatment?
  • What factors in my case affect the prognosis?
  • What does "success" look like for treatment?

๐Ÿ’ฐ Insurance and Cost

Insurance Coverage

  • Most insurance covers second opinions โ€” especially for cancer
  • Call your insurance beforehand to verify coverage
  • Ask about out-of-network benefits if the center isn't in network
  • Some centers have financial assistance programs

Virtual Second Opinion Costs

  • Virtual consultations typically cost $500-$2,000 out of pocket if not covered
  • Some may be covered by insurance โ€” always check first
  • Compared to the cost of wrong treatment, this is minimal
โœ“ Worth the investment: A second opinion might identify a clinical trial, suggest a different approach, or confirm you're on the right track. Either way, you gain valuable information.

โฐ Timing Considerations

When to Get a Second Opinion

  • After diagnosis, before treatment starts โ€” Ideal timing
  • Before major decisions โ€” Surgery, changing treatment plan
  • At recurrence โ€” Options may be different than at initial diagnosis
  • When you have doubts โ€” Trust your instincts

Can I Wait?

GBM requires prompt treatment, but taking 1-2 weeks for a second opinion is generally safe and worthwhile. Don't let urgency prevent you from getting adequate information.

โš ๏ธ Communicate with your current team: Let them know you're seeking a second opinion. Good doctors support this. If your doctor discourages a second opinion, that's a red flag.

๐Ÿค After the Second Opinion

If Opinions Agree

This is reassuring! You can proceed with confidence in your treatment plan.

If Opinions Differ

  • Ask each doctor to explain their reasoning
  • Consider a third opinion if differences are significant
  • Look at objective factors: clinical trial access, surgical volume, specific expertise
  • Trust your gut about which team you feel most confident with
  • You can get treatment at the second opinion center or bring recommendations back to your local team

Sharing Results

  • Request a written summary of the second opinion
  • Share with your primary oncology team
  • Use the information to have informed discussions about your care

๐Ÿš€ Fast-Track Options

Need a second opinion quickly? Some tips:

  • Explain urgency when scheduling โ€” many centers can expedite
  • Offer flexibility โ€” say you can come any day on short notice for cancellations
  • Consider virtual first โ€” faster than waiting for in-person appointments
  • Contact multiple centers โ€” schedule with whoever can see you soonest
  • Ask your current doctor to call โ€” physician-to-physician referrals can speed things up

โš ๏ธ Medical Disclaimer

This information is for educational purposes only. The right treatment center depends on your specific situation, location, insurance, and personal preferences. A second opinion is standard care and recommended, but the ultimate treatment decisions should be made with your medical team.