What questions should I ask my oncologist about Glioblastoma

Important Questions to Ask Your Glioblastoma Oncologist

I'm glad you're preparing to have a thorough conversation with your care team. Here are key questions organized by category to help you understand your diagnosis, treatment options, and what to expect:

About Your Specific Diagnosis

1. What is the grade and type of glioblastoma I have? (This helps you understand how aggressive it is)
2. What are my tumor's molecular characteristics? Specifically ask about:
   • MGMT methylation status (this affects treatment decisions)
   • IDH mutation status
   • Any other biomarkers that might influence treatment
3. Has genetic testing been done on my tumor? If not, why not, and should it be?
4. What does my imaging show about tumor location and size? (Understanding where it is matters for treatment planning)

About Treatment Options

1. What is the standard treatment plan you recommend for me, and why?
2. Will I need surgery, and if so, what are the goals? (Removing as much tumor as safely possible vs. biopsy only)
3. What chemotherapy and radiation are you recommending? According to NCCN Guidelines for glioblastoma, the standard approach typically includes surgery followed by radiation with concurrent chemotherapy (temozolomide), but your specific situation may differ.
4. Are there clinical trials I should consider? Ask specifically about:
   • Immunotherapy trials (like personalized T-cell approaches)
   • Combination therapy trials
   • Trials testing new drugs or approaches
5. What about Optune (tumor-treating fields)? This is an FDA-approved device that may be used alongside other treatments.

About Emerging and Alternative Approaches

1. Are there immunotherapy options available to me? Research presented at CancerPatientLab webinars discusses personalized T-cell immunotherapy approaches for glioblastoma, which work by activating your own immune system to fight cancer cells. Ask if you might be eligible for such trials.

2. What about off-label treatments or combination approaches? Your doctor can discuss whether combining standard treatments with other approaches might be beneficial in your case.

3. Are there nutritional or supportive approaches you recommend? Some patients explore ketogenic diets or other nutritional strategies alongside conventional treatment—ask what evidence exists and whether it's appropriate for you.

About Side Effects and Managing Treatment

1. What side effects should I expect from radiation and chemotherapy? (Brain swelling, fatigue, cognitive changes, etc.)
2. How will you monitor for and manage these side effects?
3. What symptoms should I report immediately?
4. Will I need steroids, and for how long? (These are often used to reduce brain swelling)

About Your Prognosis and Follow-Up

1. What is the typical timeline for treatment? (How long will radiation last? How many chemotherapy cycles?)
2. How will you monitor my response to treatment? (MRI scans, timing, what they're looking for)
3. What happens after initial treatment ends? (Maintenance therapy, surveillance schedule)
4. How often will I need follow-up appointments and imaging?

About Your Healthcare Team

1. Who will be coordinating my care? (Neurosurgeon, neuro-oncologist, radiation oncologist, etc.)
2. How do I reach you or your team if I have urgent questions?
3. Should I get a second opinion? (This is always reasonable with a serious diagnosis)
4. Are there patient navigators or support services available? (Social work, psychology, support groups)

About Clinical Trials Specifically

1. What clinical trials am I eligible for based on my tumor characteristics? According to CancerPatientLab resources on glioblastoma navigation, patients should ask about trials studying:

• New immunotherapy combinations
• Personalized treatment approaches
• Minimal residual disease management

1. What would participation involve? (Time commitment, location, what happens if I want to stop)
2. How is my safety monitored in a trial?

---

Tips for Your Appointment

• Bring a notebook or recording device (ask permission first) to capture details
• Bring a trusted person to help listen and take notes
• Write down your questions beforehand so you don't forget them
• Ask your doctor to explain anything you don't understand—don't hesitate to ask them to use simpler language
• Request copies of your pathology report and imaging results so you can review them and share with other doctors if needed

Between Appointments

According to CancerPatientLab resources on glioblastoma navigation, platforms like Medoh can help you:

• Track treatments and clinical trials you're interested in
• Save questions you want to ask
• Connect with other resources and support services
• Organize your medical information

---

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.