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Living with cancer· Appointment prep

Appointment sheet: Astrocytoma, IDH-mutant (grades 2 to 4)

One page to bring and write on: your details, the questions for Astrocytoma, IDH-mutant (grades 2 to 4) 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

Astrocytoma, IDH-mutant (grades 2 to 4)

Prepared with OnCo (onco.cc/prep/idh-mutant-astrocytoma/). 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

24 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 R132H immunohistochemistry, with sequencing of IDH1 and IDH2 for non-canonical mutations, 1p/19q status, ATRX loss and TP53 mutation, CDKN2A/B homozygous deletion, DNA methylation class and G-CIMP status), 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?
Newly diagnosed, all grades
  1. 5.For my situation (newly diagnosed, all grades), which of the standard options do you recommend and why?
Grade 2, residual or recurrent, low risk
  1. 6.For my situation (grade 2, residual or recurrent, low risk), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Vorasidenib, and what side effects should I expect?
  3. 8.How do the results of INDIGO apply to someone like me?
Grade 2, high risk (age 40 or over, subtotal resection)
  1. 9.For my situation (grade 2, high risk (age 40 or over, subtotal resection)), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Procarbazine, Lomustine (CCNU), Vincristine or related drugs, and what side effects should I expect?
  3. 11.How do the results of EORTC 22033-26033 apply to someone like me?
Grade 3
  1. 12.For my situation (grade 3), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Temozolomide, and what side effects should I expect?
  3. 14.How do the results of CATNON (EORTC 26053-22054) apply to someone like me?
Grade 4
  1. 15.For my situation (grade 4), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Temozolomide, and what side effects should I expect?
  3. 17.How do the results of EORTC 26981 / NCIC CE.3 (Stupp trial) apply to someone like me?
Recurrence
  1. 18.For my situation (recurrence), which of the standard options do you recommend and why?
  2. 19.Am I a candidate for Lomustine (CCNU), Temozolomide, Bevacizumab (glioblastoma use), and what side effects should I expect?
Any stage
  1. 20.Are there clinical trials I could join, for example of Vorasidenib, Safusidenib, Olutasidenib, DNA methylation profiling?
  2. 21.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 22.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 23.I read that “Whether vorasidenib should replace radiotherapy and chemotherapy or only defer them, and what to do at progression on it”. How does that affect my plan?
  5. 24.I read that “No IDH inhibitor has yet shown benefit in grade 3 or 4 IDH-mutant astrocytoma”. How does that affect my plan?

The words I may hear

  • MGMT promoter methylation: A chemical switch that turns off a DNA-repair gene.
  • Extent of resection (RANO resect classes): How much of a brain tumour the surgeon removes, measured on an MRI scan soon after the operation.
  • Blood-brain barrier (BBB): The tight seal around brain blood vessels that keeps most drugs out, one of the two main reasons brain cancer is so hard to treat.
  • Re-irradiation: Giving radiotherapy again to a region that has already been treated, once thought impossible because normal tissues remember the first dose.

Tests and results to bring

Newly diagnosed, all grades: Maximal safe resection with awake or functional mapping where needed; integrated histological and molecular diagnosis (IDH, 1p/19q, ATRX, CDKN2A/B, methylation class).

Biomarker results to ask for: IDH1 R132H immunohistochemistry, with sequencing of IDH1 and IDH2 for non-canonical mutations, 1p/19q status (intact; codeletion defines oligodendroglioma), ATRX loss and TP53 mutation, CDKN2A/B homozygous deletion (assigns grade 4), DNA methylation class and G-CIMP status, MGMT promoter methylation (less informative than in glioblastoma), Extent of resection on post-operative MRI.

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

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