Navigating Neurosurgery
Questions to Ask the Neurosurgeon – a Comprehensive List
Facing a primary brain tumor diagnosis is a life-changing event that brings with it many questions and uncertainties. One of the most critical steps early in your journey is meeting with a neurosurgeon to discuss potential surgical options, such as a biopsy or resection. This consultation is an essential opportunity to gain a deeper understanding of your tumor, the surgical procedures available, and the impact they may have on your health and quality of life.
To make the most of this important conversation, it’s crucial to come prepared with a comprehensive list of questions. These questions will help you gather the information you need to make informed decisions about your treatment, understand the risks and benefits, and prepare for what lies ahead.
To help guide your talk, BTN has compiled an extensive list of questions that you can bring to your neurosurgery consultation. These questions cover various aspects of diagnosis, surgical options, pre- and post-surgical care, long-term considerations, and available support resources. This list was thoughtfully assembled from various reputable organizations and institutions dedicated to brain tumor research and patient support, ensuring that you have access to the most pertinent and insightful questions for your journey.
By addressing these topics with your neurosurgeon, you can feel more confident and empowered as you navigate your brain tumor treatment.
Diagnosis and Prognosis
- What type of brain tumor do I have, and where is it located?
- Is the tumor benign or malignant?
- What is the tumor’s grade and stage?
- What are the chances that the tumor will grow or spread? What is the timeline to expect this?
- How will the tumor impact my brain function and overall health?
- What are the survival rates for my specific type and grade of brain tumor?
- Should I consider getting a second opinion before proceeding with surgery?
- Do you have any recommendations or referrals for a second opinion?
Surgical Options
- What surgical options are available to me?
- What is the goal of surgery—biopsy, partial resection, or complete resection?
- What are the risks and benefits of each surgical option?
- Will the surgery be performed through a craniotomy, or are there minimally invasive options available?
- How much of the tumor do you expect to remove?
- What happens if you can’t remove the entire tumor?
- Will I need additional treatments after surgery, such as radiation or chemotherapy?
- Are there any concerns with my waiting on scheduling surgery in order to pursue a second opinion or clinical trial?
Pre-Surgical Considerations
- Will I need to stay in the hospital after surgery? If so, for how long?
- What tests or imaging will I need before surgery?
- How should I prepare for surgery?
- Are there any medications or supplements I should avoid before surgery?
- What are the potential risks or complications of the surgery?
- What risks are associated with my tumor’s location?
- How experienced are you in performing this type of surgery?
- What is the expected recovery time?
Intraoperative Considerations
- Will you use brain mapping or other techniques to avoid critical brain areas during surgery?
- How will you monitor my brain function during surgery?
- Will you be sending my tissue out for molecular profiling? If so, how long will it take for these results to come back?
- Who will review the results of my tissue testing with me?
- Will I be awake during any part of the surgery?
- What techniques will you use to ensure the maximum safe resection of the tumor?
Post-Surgical Care and Recovery
- What can I expect immediately after surgery?
- What are the common side effects or complications after surgery?
- Will I need rehabilitation or physical therapy after surgery?
- How will the surgery affect my cognitive functions, such as memory, speech, and coordination?
- How will my pain be managed after surgery?
- What follow-up care will I need, and how often will I need to see you?
- What signs of complications should I watch for after I return home?
Long-Term Considerations
- How will the surgery impact my quality of life in the long term?
- What are the chances of the tumor recurring after surgery?
- Will I need regular MRIs or other imaging after surgery to monitor for recurrence?
- Are there any lifestyle changes I should make to support my recovery and long-term health?
Molecular Testing and Biomarkers
- What is molecular testing, and why is it important for my brain tumor?
- Will you be sending my tissue out for molecular profiling?
- If so, how long will it take for these results to come back?
- Who will review the results of my tissue testing with me?
- How can the results of molecular testing affect my treatment plan?
- Which specific molecular tests or biomarkers will you be testing for?
- Are you testing for mutations, gene expressions, or other biomarkers (e.g., IDH1/2 mutations, MGMT promoter methylation, EGFR, TERT promoter, etc.)?
- Are you checking my MGMT promoter methylation?
- What is methylation and how does it inform my treatment options?
- If my tumor has certain molecular features, does that mean I might benefit from clinical trials?
- How can we find and evaluate clinical trials that are relevant to my molecular profile?
- Will the molecular test results help predict how well I will respond to certain treatments?
- Is molecular testing covered by my insurance?
- If my insurance doesn’t cover the testing, what are my options?
- Are there any financial assistance programs or grants available?
- Can you refer me to a genetic counselor or another specialist who can help me understand my test results?
Clinical Trials and Research
- What are clinical trials?
- Are there any clinical trials available that might be appropriate for me?
- How do I find out if I’m eligible for any experimental treatments or surgeries?
- Are there any organizations that can help me identify clinical trials or additional treatment options if none are available to me at this institution?
- Are there new or emerging surgical techniques that might be applicable to my case?
- What are the timepoints for clinical trial enrollment?
- Will the decisions I make now affect my ability to enroll in clinical trials in the future?
Support and Resources
- Can you refer me to a neuro-oncologist or other specialists for additional care?
- Can you provide a list of organizations I should connect with to support me throughout my cancer journey?
- What hospital support services are available for me and my family?
- Are there any patient support groups or counseling services you recommend?
- How can I get in touch with you or your team if I have more questions before or after surgery?
References: National Cancer Institute, American Brain Tumor Association, CERN Foundation, Pediatric Brain Tumor Foundation, National Brain Tumor Society, American Cancer Society, CancerCare, The Brain Tumour Charity, BrainLab, Roswell Park, UCLA Health, and Moffitt Cancer Center