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PubMed This is a summary of 24 peer-reviewed journal articles Updated
Neurosurgery

Building Your Care Team & Preparing for the Journey

At a Glance

A glioblastoma diagnosis requires a multidisciplinary team at a high-volume center, including a neurosurgeon, neuro-oncologist, and radiation oncologist. Bring physical imaging disks to your visits, and engage early with palliative care and advanced directives to ensure comprehensive support.

Managing a glioblastoma diagnosis is not a journey anyone should take alone. Because of the tumor’s complexity, your care requires a coordinated team of specialists who work together to address every aspect of your health—physical, cognitive, and emotional. Building this team at a high-volume center is one of the most impactful steps you can take for your care [1][2].

Assembling Your Expert Team

A standard-of-care team for glioblastoma is “multidisciplinary,” meaning it includes several different types of doctors who collaborate on your plan [3]:

  • The Neurosurgeon: This is often the first specialist you meet. Their role is to safely remove as much of the tumor as possible using advanced tools like fluorescence-guided surgery [4].
  • The Neuro-Onclogist: This doctor is the “quarterback” of your long-term care. They manage chemotherapy, oversee clinical trials, and coordinate your medications to control symptoms like swelling and seizures [5][6].
  • The Radiation Oncologist: This specialist designs and oversees your radiation therapy, ensuring the tumor is targeted while protecting as much healthy brain tissue as possible [7][5].
  • The Support Team: This includes nurse navigators, social workers, and palliative care specialists who help manage “quality of survival” and the logistical hurdles of treatment [8][9].

Preparing for Your First Appointment

When you visit a neuro-oncology center for the first time, you must bring the “physical artifacts” of your diagnosis. Do not assume the hospital has everything in their system. You should carry:

  1. Imaging on Disk: A CD or digital transfer of all your MRI and CT scans. The actual images are often more important to the team than the written report [10][11].
  2. Pathology Slides: If you had surgery at a different hospital, you may need to request the physical tissue slides so the new center’s pathologists can confirm the molecular diagnosis [12][13].
  3. A Medication Log: A list of every drug you are currently taking, especially steroids (like dexamethasone) and anti-seizure medications.

Vetting Your Care Center

Research shows that patients treated at centers with high surgical volumes often have better outcomes [14]. Ask the following questions to ensure you are in the right place:

  • “Does this center have a weekly multidisciplinary tumor board where my case will be discussed by all the specialists?” [2][15].
  • “How many glioblastoma cases does this team manage each year?”
  • “Do you have dedicated neuro-oncology clinical trials available on-site?” [16].

Supporting Caregivers and Future Planning

Glioblastoma affects the whole family. Because the tumor can impact personality, mood, and cognitive function—especially if it is in the left temporal lobe—caregivers often face a significant emotional and physical burden [17][18].

  • Early Palliative Care: Engaging with palliative care early (not just at the end of life) can help manage the unique neurologic symptoms of GBM and provide a roadmap for caregiver support [17][19].
  • Advanced Directives: It is vital to complete a living will or advanced directive while you are feeling clear and cognitively intact [20][21]. This ensures your values and wishes for medical care are documented and honored, even if your ability to communicate changes later in the journey [22][23]. Use these early days to designate a “healthcare proxy” who understands your priorities [24].

Common questions in this guide

Who should be on my glioblastoma care team?
Your care team should include a neurosurgeon, neuro-oncologist, and radiation oncologist. A complete support team with nurse navigators, social workers, and palliative care specialists is also essential for comprehensive and coordinated care.
What should I bring to my first neuro-oncology appointment?
You should bring physical copies of all MRI and CT scans on a disk, a complete log of your current medications, and potentially your physical tissue slides if you had surgery at another hospital. Do not assume the new center has access to your records.
Why is a multidisciplinary tumor board important for glioblastoma?
A multidisciplinary tumor board ensures that experts from different specialties review your case together. This collaborative approach leads to a more comprehensive and personalized treatment plan for complex brain tumors.
When should palliative care be introduced for glioblastoma?
Palliative care should be introduced early in your treatment journey, not just at the end of life. These specialists help manage unique neurologic symptoms, improve your quality of life, and provide vital support for caregivers.
Why do I need an advanced directive if I was just diagnosed?
Completing an advanced directive early ensures your healthcare wishes are documented while you are feeling clear and cognitively intact. This guides your family and medical team if your ability to communicate changes later in your journey.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many glioblastoma surgeries do you perform each year, and how many are treated at this center?
  2. 2.Will my case be reviewed by a weekly multidisciplinary neuro-oncology tumor board?
  3. 3.Do you have a dedicated nurse navigator who can serve as my primary point of contact for coordination and symptom management?
  4. 4.Is there a palliative care team available here that I can meet with early in my treatment to support my family?
  5. 5.What clinical trials are currently open at this center for newly diagnosed patients?

Questions For You

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References

References (24)
  1. 1

    Advanced case of glioblastoma multiforme and pregnancy. An ethical dilemma.

    Al-Rasheedy IM, Al-Hameed FM

    Neurosciences (Riyadh, Saudi Arabia) 2015; (20(4)):388-91 doi:10.17712/nsj.2015.4.20150069.

    PMID: 26492122
  2. 2

    Epilepsy and brain tumors: Two sides of the same coin.

    Aronica E, Ciusani E, Coppola A, et al.

    Journal of the neurological sciences 2023; (446()):120584 doi:10.1016/j.jns.2023.120584.

    PMID: 36842341
  3. 3

    Central nervous system pediatric multi-disciplinary tumor board: a single center experience.

    Russo R, Verdolotti T, Perna A, et al.

    BMC cancer 2024; (24(1)):1146 doi:10.1186/s12885-024-12882-7.

    PMID: 39272048
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    5-aminolevulinic enhanced brain lesions mimic glioblastoma: A case report and literature review.

    Chang CY, Chen CC

    Medicine 2024; (103(1)):e34518 doi:10.1097/MD.0000000000034518.

    PMID: 38181251
  5. 5

    Trends in glioblastoma: outcomes over time and type of intervention: a systematic evidence based analysis.

    Marenco-Hillembrand L, Wijesekera O, Suarez-Meade P, et al.

    Journal of neuro-oncology 2020; (147(2)):297-307 doi:10.1007/s11060-020-03451-6.

    PMID: 32157552
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    Molecular Targeted Therapies in Glioblastoma Multiforme: A Systematic Overview of Global Trends and Findings.

    Begagić E, Pugonja R, Bečulić H, et al.

    Brain sciences 2023; (13(11)) doi:10.3390/brainsci13111602.

    PMID: 38002561
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    Herpes Simplex Virus 1 encephalitis with normal cerebrospinal fluid after brain radiotherapy in a patient with glioblastoma. A case report and review of literature.

    Mutti C, Curti E, Ciliento R, et al.

    Acta bio-medica : Atenei Parmensis 2019; (90(2)):327-330 doi:10.23750/abm.v90i2.8218.

    PMID: 31125013
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    The emotional journey of neuro-oncology: Primary brain tumor patients share their experience during this life-threatening disease.

    Loughan AR, Reid M, Willis KD, et al.

    Neuro-oncology practice 2023; (10(1)):71-78 doi:10.1093/nop/npac067.

    PMID: 36659970
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    Sociocognitive Functioning and Psychosocial Burden in Patients with Brain Tumors.

    Pertz M, Schlegel U, Thoma P

    Cancers 2022; (14(3)) doi:10.3390/cancers14030767.

    PMID: 35159034
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    Identification of key elements in MRI reporting of intracranial meningiomas based on a nationwide survey of clinical experts in Germany.

    Huckhagel T, Abboud T, Regelsberger J, et al.

    Scientific reports 2025; (15(1)):1043 doi:10.1038/s41598-024-83737-1.

    PMID: 39762278
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    Deep learning-based end-to-end scan-type classification, pre-processing, and segmentation of clinical neuro-oncology studies.

    Chakrabarty S, Abidi SA, Mousa M, et al.

    Proceedings of SPIE--the International Society for Optical Engineering 2023; (12469()) doi:10.1117/12.2647656.

    PMID: 39263425
  12. 12

    Plasma nanoDSF Denaturation Profile at Baseline Is Predictive of Glioblastoma EGFR Status.

    Eyraud R, Ayache S, Tsvetkov PO, et al.

    Cancers 2023; (15(3)) doi:10.3390/cancers15030760.

    PMID: 36765718
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    Canadian Expert Consensus Recommendations for the Diagnosis and Management of Glioblastoma: Results of a Delphi Study.

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    Current oncology (Toronto, Ont.) 2025; (32(4)) doi:10.3390/curroncol32040207.

    PMID: 40277764
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    Association between surgical volume and outcomes after craniotomy for brain tumor removal: A South Korean nationwide cohort study.

    Choi HR, Song IA, Oh TK

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    PMID: 35427988
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    Pediatric neurosurgery without pediatric neurosurgeons: a comparison of outcomes of pediatric brain tumor resections in Pakistan with a national US surgical database.

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    PMID: 40014156
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    Review of Novel Surgical, Radiation, and Systemic Therapies and Clinical Trials in Glioblastoma.

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    International journal of molecular sciences 2024; (25(19)) doi:10.3390/ijms251910570.

    PMID: 39408897
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    Palliative Care in High-Grade Glioma: A Review.

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    Pre-Surgery Cognitive Performance and Voxel-Based Lesion-Symptom Mapping in Patients with Left High-Grade Glioma.

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    Living with glioblastoma - the need for integrated support based on experiences of chaos, loss of autonomy, and isolation in both patients and their relatives.

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This page provides educational information about building a glioblastoma care team. It does not replace professional medical advice from your neuro-oncology team.

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