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Living with cancer· Appointment prep

Appointment sheet: Early HER2-positive breast cancer

One page to bring and write on: your details, the questions for Early 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

Early HER2-positive breast cancer

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

22 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 3+ or in situ hybridisation amplification, Hormone receptor status, Pathological complete response and residual cancer burden at surgery, Left ventricular ejection fraction before and during trastuzumab, Early FDG PET response), 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?
Stage I, small node-negative tumours
  1. 5.For my situation (stage i, small node-negative tumours), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Paclitaxel / nab-paclitaxel, Trastuzumab, and what side effects should I expect?
  3. 7.How do the results of APT (adjuvant paclitaxel-trastuzumab) apply to someone like me?
Stage II to III, before surgery
  1. 8.For my situation (stage ii to iii, before surgery), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Carboplatin, Docetaxel, Paclitaxel / nab-paclitaxel or related drugs, and what side effects should I expect?
  3. 10.How do the results of TRAIN-2 and DESTINY-Breast11 apply to someone like me?
Pathological complete response at surgery
  1. 11.For my situation (pathological complete response at surgery), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Trastuzumab, Pertuzumab, and what side effects should I expect?
  3. 13.How do the results of APHINITY and HERA, NSABP B-31 & NCCTG N9831 (adjuvant trastuzumab) apply to someone like me?
Residual invasive disease at surgery
  1. 14.For my situation (residual invasive disease at surgery), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Trastuzumab deruxtecan, Trastuzumab emtansine, and what side effects should I expect?
  3. 16.How do the results of DESTINY-Breast05 and KATHERINE apply to someone like me?
Local therapy and the heart
  1. 17.For my situation (local therapy and the heart), which of the standard options do you recommend and why?
Any stage
  1. 18.Are there clinical trials I could join, for example of DESTINY-Breast05, DESTINY-Breast11, PHERGain, Trastuzumab deruxtecan?
  2. 19.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 20.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 21.I read that “Which women can skip chemotherapy entirely without losing cure”. How does that affect my plan?
  5. 22.I read that “Interstitial lung disease from trastuzumab deruxtecan in women who would otherwise have been cured”. How does that affect my plan?

The words I may hear

  • Trastuzumab cardiotoxicity: HER2 drugs can weaken the heart's pumping, usually reversibly, so heart function is checked every three months during treatment.
  • Residual cancer burden (RCB): A pathology score for how much cancer remains in the breast and lymph nodes after pre-surgery treatment, from 0 (none) to III (a large amount), combining tumour bed size, cellularity and nodal involvement.
  • Pathologic complete response (pCR): No invasive cancer left in the breast and lymph nodes when the surgeon removes the tissue after pre-surgery treatment.
  • Lumpectomy (breast-conserving surgery): Removing only the tumour with a rim of normal breast, keeping the breast; almost always followed by radiotherapy.
  • Mastectomy: Removing the whole breast, either for cancer or preventively in BRCA1/2 carriers, where bilateral risk-reducing mastectomy cuts breast cancer risk by 90% or more.

Tests and results to bring

Biomarker results to ask for: HER2 immunohistochemistry 3+ or in situ hybridisation amplification, Hormone receptor status (co-positive tumours respond less to HER2 therapy alone), Pathological complete response and residual cancer burden at surgery, Left ventricular ejection fraction before and during trastuzumab, Early FDG PET response (PHERGain, investigational), PIK3CA mutation (lower complete response rates, research use).

Scans and tests linked to this cancer: MRD / molecular residual disease testing, 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