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Living with cancer· Appointment prep

Appointment sheet: Brain metastases (secondary brain tumours)

One page to bring and write on: your details, the questions for Brain metastases (secondary brain tumours) 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 metastases (secondary brain tumours)

Prepared with OnCo (onco.cc/prep/secondary-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

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 Primary tumour type and its driver, Number, size and location of lesions on contrast MRI, Graded prognostic assessment, Cerebrospinal fluid cytology and cell-free DNA for leptomeningeal disease, Distinguishing radionecrosis from progression), 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?
Symptomatic oedema
  1. 5.For my situation (symptomatic oedema), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Dexamethasone, and what side effects should I expect?
Single large or symptomatic lesion, fit patient
  1. 7.For my situation (single large or symptomatic lesion, fit patient), which of the standard options do you recommend and why?
Limited number of metastases
  1. 8.For my situation (limited number of metastases), which of the standard options do you recommend and why?
  2. 9.How do the results of Alliance N0574 (NCCTG N0574) apply to someone like me?
Many metastases or leptomeningeal spread
  1. 10.For my situation (many metastases or leptomeningeal spread), which of the standard options do you recommend and why?
  2. 11.How do the results of NRG CC001 and QUARTZ apply to someone like me?
Driver-positive lung cancer, asymptomatic metastases
  1. 12.For my situation (driver-positive lung cancer, asymptomatic metastases), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Osimertinib, Lorlatinib, Alectinib, and what side effects should I expect?
  3. 14.How do the results of CROWN apply to someone like me?
HER2-positive breast cancer
  1. 15.For my situation (her2-positive breast cancer), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Tucatinib, Trastuzumab deruxtecan, and what side effects should I expect?
  3. 17.How do the results of HER2CLIMB and DESTINY-Breast12 apply to someone like me?
Melanoma
  1. 18.For my situation (melanoma), which of the standard options do you recommend and why?
  2. 19.Am I a candidate for Nivolumab, Ipilimumab, Dabrafenib + trametinib, and what side effects should I expect?
Any stage
  1. 20.Are there clinical trials I could join, for example of Trastuzumab deruxtecan, Tucatinib, Lorlatinib, Focused-ultrasound blood-brain barrier opening?
  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 “Trials still often exclude patients with brain metastases, so drug activity in the brain is learned late”. How does that affect my plan?
  5. 24.I read that “Leptomeningeal disease has no standard treatment and a survival of months”. How does that affect my plan?

The words I may hear

  • Whole-brain radiotherapy (WBRT): Irradiating the entire brain, typically 30 Gy in 10 sessions, when metastases are too numerous or too widespread (leptomeningeal) for focused radiosurgery.
  • HER2-positive brain metastases: Up to half of women with metastatic HER2-positive breast cancer develop brain metastases, because antibodies control the body but historically not the brain.
  • Leptomeningeal disease: Cancer cells spreading in the fluid and membranes that bathe the brain and spinal cord, rather than as a solid lump.
  • 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.
  • 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.
  • Brain metastases (intracranial disease): Tumour deposits that have travelled to the brain from a cancer elsewhere, ten times more common than cancers that start in the brain, mostly from lung, breast, melanoma and kidney cancer.

Tests and results to bring

Biomarker results to ask for: Primary tumour type and its driver (EGFR, ALK, HER2, BRAF, PD-L1), Number, size and location of lesions on contrast MRI, Graded prognostic assessment (age, performance status, extracranial disease, lesion count, molecular subtype), Cerebrospinal fluid cytology and cell-free DNA for leptomeningeal disease, Distinguishing radionecrosis from progression (perfusion MRI, amino acid PET).

Scans and tests linked to this cancer: 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