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Living with cancer· Appointment prep

Appointment sheet: Vestibular schwannoma (acoustic neuroma)

One page to bring and write on: your details, the questions for Vestibular schwannoma (acoustic neuroma) 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

Vestibular schwannoma (acoustic neuroma)

Prepared with OnCo (onco.cc/prep/vestibular-schwannoma/). 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

14 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 Tumour size and growth on serial MRI, Pure-tone audiometry and word recognition, Germline NF2 testing when bilateral, young or with other schwannomas or meningiomas, Facial nerve functionbefore and after treatment), 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?
Small tumour, stable or good hearing
  1. 5.For my situation (small tumour, stable or good hearing), which of the standard options do you recommend and why?
Growing small or medium tumour
  1. 6.For my situation (growing small or medium tumour), which of the standard options do you recommend and why?
Large tumour with brainstem compression or hydrocephalus
  1. 7.For my situation (large tumour with brainstem compression or hydrocephalus), which of the standard options do you recommend and why?
NF2-related schwannomatosis, progressive tumour or falling hearing
  1. 8.For my situation (nf2-related schwannomatosis, progressive tumour or falling hearing), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Bevacizumab, Brigatinib, and what side effects should I expect?
Any stage
  1. 10.Are there clinical trials I could join, for example of Brigatinib, Bevacizumab, Stereotactic radiosurgery (Gamma Knife, CyberKnife, linac SRS)?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “No approved drug for NF2-related schwannomatosis; bevacizumab is off label and its effect wanes”. How does that affect my plan?
  5. 14.I read that “Predicting which small tumours will grow, so that the rest can be left alone”. How does that affect my plan?

The words I may hear

  • Stereotactic radiosurgery (SRS): A single high dose of radiation delivered to a brain tumour or metastasis by beams converging from all sides, so the target gets a destructive dose while the surrounding brain gets little; no scalpel is involved despite the name.

Tests and results to bring

Biomarker results to ask for: Tumour size and growth on serial MRI (Koos grade), Pure-tone audiometry and word recognition (hearing class), Germline NF2 testing when bilateral, young or with other schwannomas or meningiomas, Facial nerve function (House-Brackmann grade) before and after treatment.

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

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