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Living with cancer· Appointment prep

Appointment sheet: HER2-positive breast cancer with brain metastases

One page to bring and write on: your details, the questions for HER2-positive breast cancer with brain metastases 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

HER2-positive breast cancer with brain metastases

Prepared with OnCo (onco.cc/prep/her2-positive-breast-brain-metastases/). 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

23 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 HER2 status on the primary or an extracranial metastasis, Contrast-enhanced brain MRI at baseline and every six to twelve weeks on treatment, Number, size and location of lesions, Hormone receptor status, Cerebrospinal fluid cytology when leptomeningeal disease is suspected), 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?
Limited brain metastases at first presentation
  1. 5.For my situation (limited brain metastases at first presentation), which of the standard options do you recommend and why?
  2. 6.How do the results of Alliance N0574 (NCCTG N0574) apply to someone like me?
Active brain metastases after trastuzumab, pertuzumab and trastuzumab emtansine
  1. 7.For my situation (active brain metastases after trastuzumab, pertuzumab and trastuzumab emtansine), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Tucatinib, Trastuzumab, Capecitabine, and what side effects should I expect?
  3. 9.How do the results of HER2CLIMB apply to someone like me?
Brain metastases, stable or active, second line
  1. 10.For my situation (brain metastases, stable or active, second line), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Trastuzumab deruxtecan, and what side effects should I expect?
  3. 12.How do the results of DESTINY-Breast12 and DESTINY-Breast03 apply to someone like me?
First-line maintenance to delay brain progression
  1. 13.For my situation (first-line maintenance to delay brain progression), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Tucatinib, Trastuzumab, Pertuzumab, and what side effects should I expect?
  3. 15.How do the results of HER2CLIMB-05 apply to someone like me?
Later lines
  1. 16.For my situation (later lines), which of the standard options do you recommend and why?
  2. 17.Am I a candidate for Neratinib, Lapatinib, Capecitabine or related drugs, and what side effects should I expect?
  3. 18.How do the results of HER2CLIMB-02 apply to someone like me?
Any stage
  1. 19.Are there clinical trials I could join, for example of Trastuzumab deruxtecan, Tucatinib, HER2CLIMB-05, Systemic-first management of HER2-positive brain metastases?
  2. 20.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 21.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 22.I read that “No randomised trial has compared systemic therapy first with radiosurgery first for asymptomatic lesions”. How does that affect my plan?
  5. 23.I read that “Leptomeningeal disease still has no proven treatment”. How does that affect my plan?

The words I may hear

  • 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.
  • 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: HER2 status on the primary or an extracranial metastasis (brain biopsy rarely needed), Contrast-enhanced brain MRI at baseline and every six to twelve weeks on treatment, Number, size and location of lesions (radiosurgery versus whole-brain radiotherapy), Hormone receptor status, Cerebrospinal fluid cytology when leptomeningeal disease is suspected, Neurological performance status and corticosteroid requirement.

Scans and tests linked to this cancer: MRI, HER2 PET.

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