The first 60 days: Spinal cord tumours (intramedullary and intradural)
Tumours inside or around the spinal cord are rare and usually slow growing, but they press on the cord and threaten walking and bladder control. Most are removed by a surgeon watching nerve signals during the operation; radiotherapy is used when a tumour cannot be fully removed or is high grade, and there are few drugs. Below, week by week, is what OnCo's record of Spinal cord tumours (intramedullary and intradural) 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.
- PathologistNamed in the standard of care for: Intradural extramedullary meningioma or schwannoma.
- RadiologistNamed in the standard of care for: Intramedullary ependymoma or haemangioblastoma, Von Hippel-Lindau haemangioblastoma not needing immediate surgery.
- SurgeonNamed in the standard of care for: Intramedullary ependymoma or haemangioblastoma, Intradural extramedullary meningioma or schwannoma.
- Medical oncologistNamed in the standard of care for: Incompletely resected, high grade or recurrent, Von Hippel-Lindau haemangioblastoma not needing immediate surgery.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Incompletely resected, high grade or recurrent, Intradural extramedullary meningioma or schwannoma.
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.
Belzutifan, the HIF-2 alpha inhibitor approved for VHL-associated central nervous system haemangioblastomas, with surveillance imaging.
Gross total resection with intraoperative neurophysiological monitoring; complete removal is usually curative and needs no adjuvant treatment.
Focal radiotherapy with intensity-modulated or proton techniques; temozolomide for high-grade astrocytoma by extrapolation.
Resection when symptomatic or growing; radiosurgery for residual or recurrent tumour where the cord dose allows; observation for small asymptomatic lesions.
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 Compartment on MRI, MYCN amplification in spinal ependymoma, H3 K27M status in cord gliomas, Germline VHL testing for haemangioblastoma, NF2 germline status in multiple nerve sheath tumours), 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 Spinal ependymoma, Myxopapillary ependymoma of the filum terminale and cauda equina, Spinal cord astrocytoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Intramedullary ependymoma or haemangioblastoma
- For my situation (intramedullary ependymoma or haemangioblastoma), which of the standard options do you recommend and why?Guideline options include: Gross total resection with intraoperative neurophysiological monitoring; complete removal is usually curative and needs no adjuvant treatment.
Incompletely resected, high grade or recurrent
- For my situation (incompletely resected, high grade or recurrent), which of the standard options do you recommend and why?Guideline options include: Focal radiotherapy with intensity-modulated or proton techniques; temozolomide for high-grade astrocytoma by extrapolation.
- 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.
Von Hippel-Lindau haemangioblastoma not needing immediate surgery
- For my situation (von hippel-lindau haemangioblastoma not needing immediate surgery), which of the standard options do you recommend and why?Guideline options include: Belzutifan, the HIF-2 alpha inhibitor approved for VHL-associated central nervous system haemangioblastomas, with surveillance imaging.
- Am I a candidate for Belzutifan, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Intradural extramedullary meningioma or schwannoma
- For my situation (intradural extramedullary meningioma or schwannoma), which of the standard options do you recommend and why?Guideline options include: Resection when symptomatic or growing; radiosurgery for residual or recurrent tumour where the cord dose allows; observation for small asymptomatic lesions.
Any stage
- Are there clinical trials I could join, for example of Belzutifan, Proton therapy, DNA methylation profiling?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 “Almost no trial evidence; treatment is extrapolated from brain tumours and case series”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Infiltrating cord astrocytomas cannot be removed and have no effective drug”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Spinal cord tumours (intramedullary and intradural): the full pageTumours inside or around the spinal cord are rare and usually slow growing, but they press on the cord and threaten walking and bladder control. Most are removed by a surgeon watching nerve signals during the operation; radiotherapy is used when a tumour cannot be fully removed or is high grade, and there are few drugs.
- 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.
- H3 K27M (diffuse midline glioma): A single change in a histone protein that defines diffuse midline glioma, the childhood brain tumour with the fewest treatment options, and now the target of the first approved drug for it.
Every term links to the glossary.