What questions should I ask my oncologist about locally advanced Brain Cancer

Questions to Ask Your Oncologist About Locally Advanced Brain Cancer

I'm glad you're preparing for this conversation. Asking the right questions helps you understand your situation and participate in shared decision-making with your care team. Here are the most important questions organized by category:

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Questions About Your Specific Diagnosis

1. What type of brain tumor do I have? (There are over 130 different types, and each behaves differently)
2. What is the grade and stage of my tumor? (This tells you how aggressive it is)
3. What molecular characteristics does my tumor have? (For example: IDH1 mutation status, MGMT methylation status, or other genetic markers)
4. Has my tumor been tested for specific mutations or biomarkers that might guide treatment?
5. What do these test results mean for my treatment options?

According to the Musella Foundation's Brain Tumor Guide, understanding your tumor's unique molecular composition is pivotal in treatment selection, since each brain tumor is unique with its own molecular design and immune environment.

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Questions About Your Care Team's Experience

According to NCCN Guidelines for Patients: Brain Gliomas, you should ask:

1. Are you board certified? If yes, in what area?
2. What is your experience—and your team's experience—with treating the type of cancer I have?
3. How many patients like me (similar age, gender, race) have you treated?
4. Will you be consulting with experts to discuss my care? Who will you consult?
5. Is this treatment (or procedure) a major part of your practice? How often have you done this treatment in the last year?
6. How many of your patients have had complications? What were the complications?

Why this matters: The Musella Foundation emphasizes that you should find the most experienced neurosurgeon and neuro-oncologist specializing in your specific tumor type. Larger brain tumor centers typically have more advanced pathology facilities, better familiarity with latest surgical practices, and more clinical trial options.

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Questions About Treatment Options

1. What are all my treatment options for locally advanced brain cancer? (Surgery, radiation, chemotherapy, immunotherapy, clinical trials, or combinations)
2. What is the standard treatment approach for my specific type and grade of tumor?
3. Am I a candidate for surgery? If yes, what would the goals be?
4. What surgical adjuncts (special tools/techniques) would be used to make surgery safer? (Examples: intraoperative MRI, fluorescence-guided surgery, awake craniotomy, motor mapping)
5. If surgery is recommended, what is the goal—complete removal, partial removal, or biopsy only?
6. Will I be offered any special treatments at the time of surgery? (Examples: Gliadel wafers, GammaTiles, or tissue collection for personalized vaccines)

According to NCCN Guidelines, surgical principles include gross total resection when appropriate, with minimal surgical morbidity and accurate diagnosis. Your doctor should discuss factors like tumor location, resectability, and whether you have specific mutations like IDH1 that might change the surgical approach.

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Questions About Radiation and Chemotherapy

1. Will I need radiation therapy? If yes, what type? (External beam radiation, proton therapy, stereotactic radiosurgery, or others)
2. What are the benefits and risks of radiation for my specific situation?
3. Will I receive chemotherapy? If yes, which drug(s) and why?
4. If temozolomide (TMZ) is recommended, has my tumor been tested for MGMT methylation status? (This test affects how well TMZ works)
5. Are there other chemotherapy or targeted therapy options based on my tumor's molecular profile?

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Questions About Newer/Emerging Treatments

1. Am I eligible for any clinical trials? (Clinical trials may offer access to newer treatments)
2. Is Optune (tumor treating fields/TTFields) an option for me? (This is an FDA-approved device that uses alternating electric fields to disrupt tumor cell division)
3. Could immunotherapy be part of my treatment plan? (Examples: checkpoint inhibitors like Keytruda/pembrolizumab)
4. Are there any personalized medicine approaches available, such as genomic testing to identify targeted drugs?
5. Could I be a candidate for a personalized cancer vaccine based on my tumor's unique mutations?

According to the CancerPatientLab webinar "Navigating Brain Cancer" with Al Musella, emerging treatment approaches worth discussing include:

• GammaTiles (bioresorbable tiles that release radiation at surgery)
• DCVax (personalized dendritic cell vaccine made from your tumor tissue)
• Advanced genomic testing to identify targeted drugs
• Optune with high compliance rates
• Combination immunotherapy approaches

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Questions About What to Expect

According to NCCN Guidelines, ask:

1. How long will my treatment last?
2. What are the potential side effects of each treatment, and how will they be managed?
3. How will you know if my treatment is working? (What imaging or tests will be used to monitor progress?)
4. What are the chances of my tumor worsening or returning?
5. What follow-up care will I need after treatment?
6. How often will I have imaging scans, and for how long?

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Questions About Practical Matters

1. Will my insurance cover the treatment you're recommending?
2. Are there any programs to help pay for treatment?
3. What supportive care and services are available to me and my caregivers? (Physical therapy, occupational therapy, psychology, social work)
4. Who should I contact with questions or concerns if your office is closed?
5. Does this hospital or cancer center offer the best treatment for me? (Or should I seek a second opinion at a comprehensive cancer center?)

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Important Considerations

Multidisciplinary Care: The Musella Foundation strongly recommends that close and regular communication occur among all your medical providers—neurosurgeons, neuro-oncologists, radiation oncologists, and supportive care specialists. This type of coordination is more likely at comprehensive cancer centers with established brain tumor boards.

Second Opinions: If you're uncertain about your diagnosis or treatment plan, the Musella Foundation notes that the accuracy rate for brain tumor diagnosis is at least 95%, but it's highly advisable to request a second opinion from a highly-rated brain cancer clinic, especially if there are uncertainties.

Before Surgery: If surgery is planned, discuss with your neurosurgeon whether any clinical trials require registration before surgery, or whether special treatments (like Gliadel wafers or GammaTiles) or tissue handling (for vaccine development) should be considered.

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How to Use These Questions

• Prioritize: You don't need to ask all of these at once. Pick the 5-7 most important to you for your first appointment.
• Write them down: Bring a written list and take notes on the answers.
• Bring support: Consider bringing a trusted family member or friend to help listen and take notes.
• Follow up: If you don't understand an answer, ask for clarification or ask for written materials to review.

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