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Living with cancer· Appointment prep

Appointment sheet: HER2-low and HER2-ultralow metastatic breast cancer

One page to bring and write on: your details, the questions for HER2-low and HER2-ultralow metastatic breast cancer 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-low and HER2-ultralow metastatic breast cancer

Prepared with OnCo (onco.cc/prep/her2-low-metastatic-breast-cancer/). 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

19 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 immunohistochemistry score 0, ultralow, 1+ or 2+ with in situ hybridisation for 2+, Retesting on a metastatic biopsy because HER2-low status changes over time, Hormone receptor status, Baseline chest imaging and lung function for interstitial lung disease surveillance, PIK3CA, ESR1 and germline BRCA status to sequence against targeted options), 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?
Hormone receptor-positive, after endocrine therapy, chemotherapy-naive
  1. 5.For my situation (hormone receptor-positive, after endocrine therapy, chemotherapy-naive), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Trastuzumab deruxtecan, and what side effects should I expect?
  3. 7.How do the results of DESTINY-Breast06 apply to someone like me?
After one or two lines of chemotherapy
  1. 8.For my situation (after one or two lines of chemotherapy), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Trastuzumab deruxtecan, and what side effects should I expect?
  3. 10.How do the results of DESTINY-Breast04 apply to someone like me?
Triple-negative HER2-low disease
  1. 11.For my situation (triple-negative her2-low disease), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Sacituzumab govitecan, Datopotamab deruxtecan, Trastuzumab deruxtecan, and what side effects should I expect?
  3. 13.How do the results of ASCENT and TROPION-Breast02 apply to someone like me?
Lung toxicity
  1. 14.For my situation (lung toxicity), which of the standard options do you recommend and why?
Any stage
  1. 15.Are there clinical trials I could join, for example of Trastuzumab deruxtecan, Sacituzumab tirumotecan, Trastuzumab rezetecan, Disitamab vedotin?
  2. 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 18.I read that “Immunohistochemistry was never designed to score low expression and pathologists disagree at the 0 to 1+ boundary”. How does that affect my plan?
  5. 19.I read that “Whether a second topoisomerase I payload works after the first”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: HER2 immunohistochemistry score 0, ultralow, 1+ or 2+ with in situ hybridisation for 2+, Retesting on a metastatic biopsy because HER2-low status changes over time, Hormone receptor status, Baseline chest imaging and lung function for interstitial lung disease surveillance, PIK3CA, ESR1 and germline BRCA status to sequence against targeted options.

Scans and tests linked to this cancer: CT (computed tomography), 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