GBM Appointment Questions

How to use this

These are not "perfect" answers - these are signals. You're listening for a team that is experienced, organized, honest, and willing to fight with you.

1) ER/Imaging

Question: "I need urgent brain imaging. Can we do an MIRI with and without contrast?"

Good signs: - They treat it as urgent and explain next steps clearly. - They order MRI brain with and without contrast (or CT first with a plan to follow with MRI).

Red flags: - “Let’s wait a few weeks” despite worsening neuro symptoms. - No urgency, no plan, no clear follow-up.

2) Doctor and Center Fit (GBM Experience)

Question: “How many glioblastoma patients do you personally treat each year?”

Good signs: - They answer directly (a number or clear range). - They describe a routine GBM workflow (tumor board, standard protocols, trial screening).

Red flags: - They dodge the question or act offended. - They treat GBM like a rare one-off.

Question: “Do you present cases at a brain tumor board?”

Good signs: - “Yes—weekly (or regular) multidisciplinary tumor board with neurosurgery, neuro-onc, radiation onc, neuroradiology, pathology.”

Red flags: - “No, I just handle it myself.”

Question: “If this were your family member, what would you do next?”

Good signs: - They give a clear, stepwise plan and offer a second opinion without ego.

Red flags: - They get vague, dismissive, or make it about statistics only.

3) “Standard of Care” (SOC) — Definition + Timeline

Question: “Define the standard of care step-by-step for my case.”

Good signs: - They explain SOC in plain language and tailor it to you. - They name the components and why each is used. - They explain what changes the plan (tumor location, recovery, molecular markers, symptoms).

Typical SOC elements you may hear (varies by case): - Max safe surgery (if possible) - Radiation therapy - Temozolomide (TMZ) chemotherapy (often during and after radiation) - Ongoing MRIs and symptom management - Sometimes Tumor Treating Fields (TTFields/Optune)

Red flags: - “We’ll figure it out later.” - No timeline, no ownership, no explanation.

Question: “What is the timeline from surgery to radiation to chemo?”

Good signs: - They give a realistic window and explain what can speed it up or delay it. - They explain who schedules what and how you’ll be supported.

Red flags: - “Scheduling will call you” with no urgency or backup plan.

Question: “What would change the plan?”

Good signs: - They mention specific triggers: recovery status, imaging changes, side effects, steroid needs, blood counts, molecular results, trial eligibility.

Red flags: - “Nothing changes it” or “we don’t really adjust.”

4) Clinical Trials (Attitude + Process)

Question: “How do you feel about clinical trials?”

Good signs: - They’re open, proactive, and not threatened. - They say trials can be considered early, not only as a last resort.

Red flags: - “Trials are only for when everything fails.” - They discourage trials without explanation.

Question: “Do you look for trials now, or only after recurrence?”

Good signs: - “We screen early and repeatedly—at diagnosis, during SOC planning, and at each MRI decision point.”

Red flags: - “We don’t really do trials” or “we’ll talk later” with no plan.

Question: “If you don’t have trials here, who do you refer to?”

Good signs: - They name specific centers and explain how they help transfer records. - They offer to coordinate rather than abandon you.

Red flags: - “That’s on you” or no referral pathway.

5) Tumor Tissue + Genetic/Molecular Testing

Question: “What molecular/genetic testing will you run on the tumor?”

Good signs: - They describe both standard markers and broader sequencing. - They can name common markers used in gliomas (examples: IDH, MGMT) and explain what they mean.

Red flags: - “We don’t do that” or “it doesn’t matter” without nuance.

Question: “Are you sending it for next-generation sequencing (NGS)?”

Good signs: - “Yes, we do NGS (in-house or send-out). It helps with trial matching and future options.” - If not: “We don’t do it here, but we can send it out / refer you.”

Red flags: - They refuse to discuss it or act like you’re being difficult.

Question: “Where is the tumor tissue stored, and for how long?”

Good signs: - “The hospital pathology department stores it (often as blocks/slides) for years. We can request it for second opinions or additional testing.”

Red flags: - “I’m not sure” with no plan to find out.

Question: “If we want additional testing later, how do we request it?”

Good signs: - They explain the process: pathology release forms, where to send, typical turnaround.

Red flags: - No process, no ownership.

6) Surgery Quality Questions

Question: “Is the goal gross total resection (remove as much as safely possible)?”

Good signs: - “Max safe resection” with a clear explanation of what “safe” means for your tumor location.

Red flags: - Overpromising (“We’ll get it all, no problem”) or under-explaining.

Question: “What tools will you use to protect function (mapping/monitoring)?”

Good signs: - They mention appropriate intraoperative tools (monitoring/mapping) and explain why.

Red flags: - They dismiss the question or can’t explain their approach.

7) Advanced Options to Ask About (Newer Tools)

GammaTile (Cs-131 brachytherapy tiles)

Question: “Do you offer GammaTile here? If not, where is the closest center?”

Good signs: - A clear yes/no and a referral plan if no. - They explain when they consider it (often tied to surgery timing and center protocols).

Red flags: - “Never heard of it” with no willingness to explore.

Question: “Would GammaTile change external beam radiation later?”

Good signs: - They explain how local radiation might interact with later radiation planning and why they’d choose one approach.

Red flags: - Vague answers or refusal to discuss.

Tumor Treating Fields (TTFields / Optune)

Question: “Do you recommend TTFields for me? Why or why not?”

Good signs: - They discuss benefits, downsides, lifestyle impact, and support for skin care.

Red flags: - They dismiss it without explanation.

Molecular tumor board / targeted trial matching

Question: “Will my case be reviewed by a molecular tumor board?”

Good signs: - “Yes” (or a clear alternative) and how that leads to trial options.

Red flags: - No structured review process.

Immunotherapy and vaccine-style trials

Question: “What immunotherapy or vaccine trials are you watching right now?”

Good signs: - They can name categories and explain eligibility factors (timing, steroid use, prior treatments).

Red flags: - “Immunotherapy doesn’t work” as a blanket statement.

LITT (laser ablation)

Question: “Is LITT relevant for my tumor location or recurrence scenario?”

Good signs: - They explain candidacy based on location/size and whether it’s more useful in certain scenarios.

Red flags: - No explanation.

8) “Fighter vs. Pessimist” — What you’re listening for

What a fighter sounds like

Clear plan + clear ownership
Honest about risks while still focused on options
Willing to coordinate second opinions
Proactive about trials and molecular testing

What a pessimist sounds like (red flags)

Treats you like a statistic, not a person
Discourages questions
No urgency, no coordination
Acts like the outcome is already decided

You don’t have to keep a pessimistic doctor. You want someone who will fight for you.

Important note

This is practical support, not medical advice. If symptoms are severe or worsening quickly, seek emergency care.