The first 60 days: Brain and spinal cord tumours (all types)
Brain and spinal cord tumours range from slow-growing meningiomas and low-grade gliomas to glioblastoma, the commonest malignant brain tumour in adults, and a distinct set of childhood tumours such as medulloblastoma and diffuse midline glioma. Molecular markers now define them, and treatment is surgery, radiotherapy and, for some, drugs chosen by those markers. Below, week by week, is what OnCo's record of Brain and spinal cord tumours (all types) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- SurgeonNamed in the standard of care for: Glioblastoma, IDH-mutant low-grade glioma, Childhood tumours.
- Medical oncologistNamed in the standard of care for: Glioblastoma, IDH-mutant low-grade glioma, Childhood tumours.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Glioblastoma, IDH-mutant low-grade glioma, Childhood tumours.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Maximal safe resection, radiotherapy with concurrent and adjuvant temozolomide (Stupp regimen), tumour-treating fields as an option. See the glioblastoma page.
Surgery, then observation or vorasidenib for grade 2 tumours, radiotherapy and chemotherapy for higher risk.
Risk-adapted surgery, radiotherapy and chemotherapy by subgroup; BRAF and MEK inhibitors for BRAF-altered low-grade glioma. See the medulloblastoma, ependymoma and DIPG pages.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example IDH1/IDH2 mutation, 1p/19q codeletion, MGMT promoter methylation, H3 K27M alteration, BRAF V600E and KIAA1549::BRAF fusion in paediatric glioma), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Glioblastoma, IDH-mutant astrocytoma and oligodendroglioma, Paediatric low-grade glioma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Glioblastoma
- For my situation (glioblastoma), which of the standard options do you recommend and why?Guideline options include: Maximal safe resection, radiotherapy with concurrent and adjuvant temozolomide (Stupp regimen), tumour-treating fields as an option. See the glioblastoma page.
- Am I a candidate for Temozolomide, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
IDH-mutant low-grade glioma
- For my situation (idh-mutant low-grade glioma), which of the standard options do you recommend and why?Guideline options include: Surgery, then observation or vorasidenib for grade 2 tumours, radiotherapy and chemotherapy for higher risk.
- Am I a candidate for Vorasidenib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Childhood tumours
- For my situation (childhood tumours), which of the standard options do you recommend and why?Guideline options include: Risk-adapted surgery, radiotherapy and chemotherapy by subgroup; BRAF and MEK inhibitors for BRAF-altered low-grade glioma. See the medulloblastoma, ependymoma and DIPG pages.
- Am I a candidate for Dabrafenib, Trametinib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Dordaviprone, Tovorafenib?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Drugs rarely cross the blood-brain barrier at useful concentrations”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Diffuse midline glioma remains almost uniformly fatal”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
- A Prospective Pivotal Study to Evaluate the Efficacy and Safety of Avastin® Bevacizumab (BEV) With or Without Microbubble-mediated Focused Ultrasound (FUS-MB) Using NaviFUS System in Recurrent Glioblastoma Multiforme PatientsPhase 3 · recruiting · NCT06496971A Prospective, Randomized, Standard of Care Controlled, Parallel, Open-Label, Multicenter Pivotal Study to Evaluate the Efficacy and Safety of Avastin® in Combination With NaviFUS System Compared With Avastin® Alone for the Treatment of Recurrent Glioblastoma Multiforme (rGBM)
- Post-Surgical Stereotactic Radiotherapy (SRT) Versus GammaTile-ROADS (Radiation One and Done Study)Phase 3 · active · NCT04365374A Phase 3 Randomized Controlled Trial of Post-Surgical Stereotactic Radiotherapy (SRT) Versus Surgically Targeted Radiation Therapy (STaRT) With Gamma Tile for Treatment of Newly Diagnosed Metastatic Brain Tumors.
- GBM AGILEPhase platform · recruiting · NCT03970447Newly diagnosed glioblastoma (MGMT methylated and unmethylated) and recurrent glioblastoma: a Bayesian adaptive platform that screens experimental drugs against a shared standard-of-care control on overall survival and lets a winning arm expand seamlessly into a confirmatory stage
- A Pivotal Phase II Clinical Trial of Utidelone Injection Plus Capecitabine in HER2-negative Breast Cancer Patients With Brain MetastasesPhase 2 · recruiting · NCT06764940A Pivotal Phase II Clinical Trial of Utidelone Injection (UTD1) Plus Capecitabine (CAP) in HER2-negative Breast Cancer Patients With Brain Metastases
- A Study to Evaluate Tabelecleucel in Participants With Epstein Barr Virus (EBV) Associated DiseasesPhase 2 · active · NCT04554914An Open-label, Single-arm, Multicohort, Phase 2 Study to Assess the Efficacy and Safety of Tabelecleucel in Subjects With Epstein Barr Virus Associated Diseases (EBVision)
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Brain and spinal cord tumours (all types): the full pageBrain and spinal cord tumours range from slow-growing meningiomas and low-grade gliomas to glioblastoma, the commonest malignant brain tumour in adults, and a distinct set of childhood tumours such as medulloblastoma and diffuse midline glioma. Molecular markers now define them, and treatment is surgery, radiotherapy and, for some, drugs chosen by those markers.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Radiation necrosis (brain): Death of brain tissue months to years after radiosurgery or high-dose brain radiotherapy, which can look exactly like tumour growing back on a scan.
Every term links to the glossary.