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Living with cancer· Appointment prep

Appointment sheet: HER2-positive breast cancer

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

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

43 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 IHC 3+ or ISH-amplified, HR status, pCR after neoadjuvant therapy, HER2 IHC 3+ or IHC 2+ with ISH amplification; HER2 heterogeneity, HR 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?
Early stage
  1. 5.For my situation (early stage), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Trastuzumab, Trastuzumab deruxtecan, Trastuzumab emtansine, and what side effects should I expect?
  3. 7.How do the results of DESTINY-Breast11 apply to someone like me?
Metastatic
  1. 8.For my situation (metastatic), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Tucatinib, Palbociclib, and what side effects should I expect?
  3. 10.How do the results of DESTINY-Breast09 apply to someone like me?
Stage I (≤2-3 cm, node-negative)
  1. 11.For my situation (stage i (≤2-3 cm, node-negative)), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Paclitaxel / nab-paclitaxel, Trastuzumab, Trastuzumab emtansine, and what side effects should I expect?
  3. 13.How do the results of APT (adjuvant paclitaxel-trastuzumab) apply to someone like me?
Stage II-III, neoadjuvant
  1. 14.For my situation (stage ii-iii, neoadjuvant), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Trastuzumab deruxtecan, Pertuzumab, and what side effects should I expect?
  3. 16.How do the results of DESTINY-Breast11 and PHERGain apply to someone like me?
Post-neoadjuvant, pathologic complete response
  1. 17.For my situation (post-neoadjuvant, pathologic complete response), which of the standard options do you recommend and why?
  2. 18.Am I a candidate for Trastuzumab, Pertuzumab, and what side effects should I expect?
  3. 19.How do the results of APHINITY and HERA, NSABP B-31 & NCCTG N9831 (adjuvant trastuzumab) apply to someone like me?
Post-neoadjuvant, residual invasive disease
  1. 20.For my situation (post-neoadjuvant, residual invasive disease), which of the standard options do you recommend and why?
  2. 21.Am I a candidate for Trastuzumab deruxtecan, Trastuzumab emtansine, Neratinib, and what side effects should I expect?
  3. 22.How do the results of DESTINY-Breast05 and KATHERINE apply to someone like me?
Adjuvant (upfront surgery), node-positive
  1. 23.For my situation (adjuvant (upfront surgery), node-positive), which of the standard options do you recommend and why?
  2. 24.Am I a candidate for Pertuzumab, Trastuzumab, and what side effects should I expect?
  3. 25.How do the results of APHINITY and PERSEPHONE apply to someone like me?
Metastatic, first line
  1. 26.For my situation (metastatic, first line), which of the standard options do you recommend and why?
  2. 27.Am I a candidate for Trastuzumab deruxtecan, Pertuzumab, Tucatinib or related drugs, and what side effects should I expect?
  3. 28.How do the results of DESTINY-Breast09 and CLEOPATRA apply to someone like me?
Metastatic, second line
  1. 29.For my situation (metastatic, second line), which of the standard options do you recommend and why?
  2. 30.Am I a candidate for Trastuzumab deruxtecan, Tucatinib, and what side effects should I expect?
  3. 31.How do the results of DESTINY-Breast03 and HER2CLIMB apply to someone like me?
Metastatic, later lines
  1. 32.For my situation (metastatic, later lines), which of the standard options do you recommend and why?
  2. 33.Am I a candidate for Trastuzumab emtansine, Neratinib, Lapatinib or related drugs, and what side effects should I expect?
Brain metastases
  1. 34.For my situation (brain metastases), which of the standard options do you recommend and why?
  2. 35.Am I a candidate for Tucatinib, Trastuzumab deruxtecan, and what side effects should I expect?
  3. 36.How do the results of HER2CLIMB and DESTINY-Breast12 apply to someone like me?
Cardiac monitoring and survivorship
  1. 37.For my situation (cardiac monitoring and survivorship), which of the standard options do you recommend and why?
  2. 38.How do the results of PERSEPHONE apply to someone like me?
Any stage
  1. 39.Are there clinical trials I could join, for example of HER2 PET, Zanidatamab, Disitamab vedotin, TQB2102?
  2. 40.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 41.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 42.I read that “Brain metastases in ~50% of metastatic patients”. How does that affect my plan?
  5. 43.I read that “Which patients can skip chemotherapy entirely”. How does that affect my plan?

The words I may hear

  • Biosimilar: A biosimilar is a copy of a biologic drug such as trastuzumab, shown to be as safe and effective as the original once its patent expires, usually at a lower price.
  • 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.
  • Dual HER2 blockade: Using two HER2 antibodies (trastuzumab and pertuzumab) at once, which works better than one.
  • Trastuzumab cardiotoxicity: HER2 drugs can weaken the heart's pumping, usually reversibly, so heart function is checked every three months during treatment.
  • Interstitial lung disease (ILD) / pneumonitis: Interstitial lung disease (ILD) is lung inflammation, a serious side effect of some ADCs (especially Enhertu) and immunotherapy.
  • ADC sequencing: The open question of whether a second ADC works after the first one fails, especially when both carry the same type of payload.
  • HER2-positive (IHC 3+ or ISH-amplified): A cancer with too much HER2 growth-signal protein, either scored 3+ on the stain or shown to have extra copies of the gene.
  • Deauville score and PET-adapted therapy: A 1-to-5 scale for how brightly a lymphoma lights up on a PET scan, compared with the liver and the middle of the chest.
  • Lumpectomy (breast-conserving surgery): Removing only the tumour with a rim of normal breast, keeping the breast; almost always followed by radiotherapy.
  • Deep inspiration breath-hold (DIBH): Taking and holding a deep breath during each radiation beam.

Tests and results to bring

Biomarker results to ask for: HER2 IHC 3+ or ISH-amplified, HR status, pCR after neoadjuvant therapy, HER2 IHC 3+ or IHC 2+ with ISH amplification (ASCO/CAP 2018 criteria); HER2 heterogeneity, HR status (drives triple-positive management, PATINA eligibility), Pathologic complete response after neoadjuvant therapy (selects T-DM1/T-DXd post-neoadjuvant), Early FDG-PET response (PHERGain de-escalation), LVEF by echocardiography or MUGA every 3 months on anti-HER2 therapy, Brain MRI when symptomatic; surveillance MRI debated, HER2 status on re-biopsy at progression (conversion in 10-15%), PIK3CA mutation (lower pCR; INAVO122 tests inavolisib in HER2+), ctDNA MRD (investigational for post-neoadjuvant escalation).

Scans and tests linked to this cancer: Companion diagnostics, Cytogenetics and FISH, FDG PET, Histopathology & immunohistochemistry, Mammography & tomosynthesis, AI in radiology.

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