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Living with cancer· Appointment prep

Appointment sheet: Brain and spinal cord tumours (all types)

One page to bring and write on: your details, the questions for Brain and spinal cord tumours (all types) 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

Brain and spinal cord tumours (all types)

Prepared with OnCo (onco.cc/prep/brain-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 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?
  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?
Glioblastoma
  1. 5.For my situation (glioblastoma), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Temozolomide, and what side effects should I expect?
IDH-mutant low-grade glioma
  1. 7.For my situation (idh-mutant low-grade glioma), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Vorasidenib, and what side effects should I expect?
Childhood tumours
  1. 9.For my situation (childhood tumours), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Dabrafenib, Trametinib, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Dordaviprone, Tovorafenib, Emavusertib?
  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 “Drugs rarely cross the blood-brain barrier at useful concentrations”. How does that affect my plan?
  5. 15.I read that “Diffuse midline glioma remains almost uniformly fatal”. How does that affect my plan?

The words I may hear

  • 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.

Tests and results to bring

Biomarker results to ask for: IDH1/IDH2 mutation, 1p/19q codeletion, MGMT promoter methylation, H3 K27M alteration, BRAF V600E and KIAA1549::BRAF fusion in paediatric glioma, Molecular subgroups of medulloblastoma (WNT, SHH, group 3, group 4).

Scans and tests linked to this cancer: Intraoperative MRI and CT, Methylation classifier for brain tumours, MRI field strengths: 1.5 T, 3 T and 7 T.

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

The treatments I may be offered

  • Glioblastoma: Maximal safe resection, radiotherapy with concurrent and adjuvant temozolomide (Stupp regimen), tumour-treating fields as an option. See the glioblastoma page. (Temozolomide)
  • IDH-mutant low-grade glioma: Surgery, then observation or vorasidenib for grade 2 tumours, radiotherapy and chemotherapy for higher risk. (Vorasidenib)
  • Childhood tumours: 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. (Dabrafenib, Trametinib)

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