OnCo

Sign in to keep your watchlist

Your watched pages live in this browser. Sign in with an email link and OnCo keeps the same list on every device you use. Only your email address and your watchlist are stored.

Living with cancer· Appointment prep

Appointment sheet: Spinal cord tumours (intramedullary and intradural)

One page to bring and write on: your details, the questions for Spinal cord tumours (intramedullary and intradural) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Spinal cord tumours (intramedullary and intradural)

Prepared with OnCo (onco.cc/prep/spinal-cord-tumours/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

15 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.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?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Intramedullary ependymoma or haemangioblastoma
  1. 5.For my situation (intramedullary ependymoma or haemangioblastoma), which of the standard options do you recommend and why?
Incompletely resected, high grade or recurrent
  1. 6.For my situation (incompletely resected, high grade or recurrent), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Temozolomide, and what side effects should I expect?
Von Hippel-Lindau haemangioblastoma not needing immediate surgery
  1. 8.For my situation (von hippel-lindau haemangioblastoma not needing immediate surgery), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Belzutifan, and what side effects should I expect?
Intradural extramedullary meningioma or schwannoma
  1. 10.For my situation (intradural extramedullary meningioma or schwannoma), which of the standard options do you recommend and why?
Any stage
  1. 11.Are there clinical trials I could join, for example of Belzutifan, Proton therapy, DNA methylation profiling?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Almost no trial evidence; treatment is extrapolated from brain tumours and case series”. How does that affect my plan?
  5. 15.I read that “Infiltrating cord astrocytomas cannot be removed and have no effective drug”. How does that affect my plan?

The words I may hear

  • Ependymoma molecular groups (PF-A, PF-B, ZFTA, YAP1, MYCN): Ependymomas are now named by where they arise and their molecular group: posterior fossa group A (young children, hardest to cure, worse still with 1q gain), group B (older patients, mostly cured with surgery and radiotherapy), supratentorial ZFTA-fusion and YAP1-fusion tumours, and a rare aggressive MYCN-amplified spinal type; the group sets the intensity of radiotherapy and the follow-up.
  • 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.

Tests and results to bring

Biomarker results to ask for: Compartment on MRI (intramedullary, intradural extramedullary, extradural), MYCN amplification in spinal ependymoma, H3 K27M status in cord gliomas, Germline VHL testing for haemangioblastoma, NF2 germline status in multiple nerve sheath tumours, Pre-operative neurological grade (McCormick scale).

Scans and tests linked to this cancer: Active surveillance, MRI, DNA methylation profiling.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Von Hippel-Lindau haemangioblastoma not needing immediate surgery: Belzutifan, the HIF-2 alpha inhibitor approved for VHL-associated central nervous system haemangioblastomas, with surveillance imaging. (Belzutifan)
  • Intramedullary ependymoma or haemangioblastoma: Gross total resection with intraoperative neurophysiological monitoring; complete removal is usually curative and needs no adjuvant treatment. (MRI)
  • Incompletely resected, high grade or recurrent: Focal radiotherapy with intensity-modulated or proton techniques; temozolomide for high-grade astrocytoma by extrapolation. (IMRT / IGRT (modern external beam), Proton therapy, Temozolomide)
  • Intradural extramedullary meningioma or schwannoma: Resection when symptomatic or growing; radiosurgery for residual or recurrent tumour where the cord dose allows; observation for small asymptomatic lesions. (Stereotactic radiosurgery (Gamma Knife, CyberKnife, linac SRS), Active surveillance)

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call