About My Diagnosis
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What is the exact grade and type of my tumor?GBM is Grade 4, but there are subtypes (IDH-wildtype, IDH-mutant)
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What is my IDH mutation status?IDH-mutant generally has better prognosis
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What is my MGMT methylation status?Methylated MGMT responds better to temozolomide
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Where exactly is the tumor located?
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What is the current size of the tumor?
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Has the tumor spread to other areas of the brain?
About Treatment
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What is the recommended treatment plan and timeline?
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Was the surgery a gross total resection, subtotal, or biopsy only?More complete resection generally means better outcomes
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How many radiation sessions will I need? What type of radiation?
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Will I be on the standard Stupp protocol (TMZ + radiation)?
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Do you recommend Tumor Treating Fields (Optune)?Ask about eligibility and insurance coverage
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Are there any clinical trials I might be eligible for?
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What is the goal of treatment - cure, control, or palliation?
About Side Effects
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What side effects should I expect from chemotherapy?
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What side effects should I expect from radiation?
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How long will I need to take dexamethasone (steroids)?Steroids have significant side effects with long-term use
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What symptoms should prompt me to call or go to the ER?
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How will you manage fatigue during treatment?
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Will I need blood tests during treatment? How often?
About Complementary Approaches
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Are there any supplements that could interfere with my treatment?
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What is your opinion on the ketogenic diet for GBM?
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Would you be open to discussing off-label medications like mebendazole?
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Is there an integrative oncology team I can work with?
About Follow-Up & Monitoring
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How often will I have MRI scans?
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What are you looking for on each scan?
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How will you tell the difference between tumor progression and pseudoprogression?Pseudoprogression looks like growth but is actually treatment effect
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What happens if the tumor comes back?
About Quality of Life
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Can I continue to work during treatment?
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Am I allowed to drive?Seizure risk may affect driving privileges
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Are there restrictions on activities (exercise, travel, etc.)?
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Do you have a social worker or patient navigator I can speak with?
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What support resources do you recommend for patients and families?
About Your Care Team
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How many GBM patients do you treat per year?High-volume centers often have better outcomes
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Is there a tumor board that will review my case?
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Who should I contact for urgent questions?
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How do I reach you between appointments?
📝 My Notes
⚠️ Medical Disclaimer
This checklist is for informational purposes only and does not constitute medical advice. Your oncologist may not have answers to all questions immediately - some may require additional testing or consultation. The most important thing is to build a trusting relationship with your care team.