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PubMed This is a summary of 25 peer-reviewed journal articles Updated
Neuro-Oncology

Building Your Neuro-Oncology Care Team and Preparing for Visits

At a Glance

Building a multidisciplinary care team—including a neuro-oncologist, neurosurgeon, and neuropathologist—is essential for managing a glioma. Prepare for appointments by bringing your imaging discs, pathology slides, and molecular reports, and seek teams that present cases at tumor boards.

Building your medical team is one of the most important steps in managing a glioma diagnosis. Because these tumors are complex and involve delicate brain functions, “hiring” the right experts can ensure you receive the most advanced, evidence-based care [1][2]. A top-tier team doesn’t just treat the tumor; they work together to protect your physical and emotional well-being over many years of care [3].

Your Multidisciplinary Team (MDT)

A Multidisciplinary Team (MDT) is a group of specialists who meet regularly to discuss your specific case and coordinate your treatment [1].

  • Neuro-Oncologist: This is often your “quarterback.” They are doctors who specialize specifically in medical treatments for brain tumors, such as chemotherapy and targeted therapy [2].
  • Neurosurgeon: These experts focus on the surgical removal of the tumor while preserving brain function [4]. Look for one who specializes in surgical neuro-oncology [5].
  • Radiation Oncologist: A doctor who uses high-energy beams to target and kill tumor cells [2].
  • Neuropathologist: A specialist who looks at your tumor tissue and DNA markers to give you a precise 2021 WHO diagnosis [6][7].
  • Nurse Navigator/Social Worker: Your primary point of contact for scheduling, education, and emotional support [8][9].

Vetting Your Experts

Not all hospitals have the same level of expertise in brain tumors. When meeting a new doctor, consider these vetting questions to evaluate their experience:

  1. “Do you present cases at a formal multidisciplinary tumor board?” This ensures multiple experts are looking at your scans and pathology, not just one person [10][11].
  2. “What is your experience with my specific molecular subtype of glioma?” Because markers like IDH and 1p/19q change treatment, you want a team familiar with your exact tumor biology [12][13].
  3. “What is your approach to preserving quality of life and integrating palliative care early?” Finding a team that prioritizes symptom management as much as tumor treatment is key for long-term well-being [14].

Your “New Patient” Checklist

If you are seeking a second opinion or moving to a new cancer center, you are responsible for bringing your “physical artifacts.” Having these ready can prevent weeks of delays [15]:

  • Imaging Discs: Physical CD-ROMs or digital DICOM files of every MRI and CT scan you have had [15].
  • Pathology Slides: You can request the actual glass slides or “blocks” of your tumor tissue from the hospital where your biopsy or surgery was performed [16][17].
  • Molecular Reports: The full printout of your genetic testing (showing IDH, MGMT, etc.) [18].

Monitoring and “Scanxiety”

Glioma care is a long-distance run, not a sprint. You will have regular MRIs for years to monitor for changes [19].

  • The Schedule: High-grade tumors are usually scanned every 2–3 months, while low-grade tumors may be monitored every 6–12 months [20][21].
  • Pseudoprogression: A major source of anxiety is the phenomenon of pseudoprogression, where an MRI taken shortly after radiation therapy can look worse, suggesting the tumor is growing, when it is actually just inflammation and the body’s response to the treatment [22]. It is important to ask your doctor if changes on an MRI might be pseudoprogression.
  • Managing Scanxiety: The stress of waiting for scan results is real and widely recognized by care teams [23]. To help, ask your doctor for a clear timeline of when you will receive results [24]. Many centers now prioritize “same-day” results or use digital portals to shorten the wait time [25].

By surrounding yourself with specialized experts and staying organized, you move from being a patient who “receives” care to an active partner in your own health journey.

Return to Home

Common questions in this guide

What is a multidisciplinary tumor board?
A multidisciplinary tumor board is a group of specialists who meet regularly to review and discuss your specific case. This team approach ensures that multiple experts, including neuro-surgeons and oncologists, collaborate to coordinate the best treatment plan for your brain tumor.
Who should be on my neuro-oncology care team?
Your core care team should include a neuro-oncologist, a neurosurgeon specializing in brain tumors, a radiation oncologist, and a neuropathologist. You will also likely work with a nurse navigator or social worker who helps coordinate your scheduling and provides emotional support.
What should I bring to a new neuro-oncologist appointment or second opinion?
You should bring physical CD-ROMs or digital DICOM files of all your MRI and CT scans. You will also need your original tumor pathology slides and the full printout of your molecular and genetic testing reports.
How often will I need an MRI after a glioma diagnosis?
High-grade gliomas are typically monitored with an MRI every two to three months. Lower-grade tumors may only require scanning every six to twelve months to check for any changes.
What is pseudoprogression on a brain MRI?
Pseudoprogression occurs when an MRI taken shortly after radiation therapy looks worse, falsely suggesting the tumor is growing. This is actually caused by inflammation and the body's natural response to the treatment, rather than actual tumor growth.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Do you present cases like mine at a multidisciplinary tumor board, and who is on that board?
  2. 2.How many gliomas do you treat or operate on each year?
  3. 3.What is your approach to preserving quality of life and integrating palliative care early?
  4. 4.Does your center have a dedicated neuro-oncology nurse navigator or social worker I can contact with questions?
  5. 5.How quickly can I expect to hear my MRI results after a scan?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

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This page provides guidance on building a care team for a glioma diagnosis for educational purposes only. Always consult your neuro-oncologist or primary healthcare provider for specific medical advice.

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