HER2-positive breast cancer
Prepared with OnCo (onco.cc/prep/breast-her2-positive/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
37 on the sheet- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 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.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
- 5.For my situation (stage i (≤2-3 cm, node-negative)), which of the standard options do you recommend and why?
- 6.Am I a candidate for Paclitaxel / nab-paclitaxel, Trastuzumab, Trastuzumab emtansine, and what side effects should I expect?
- 7.How do the results of APT (adjuvant paclitaxel-trastuzumab) apply to someone like me?
- 8.For my situation (stage ii-iii, neoadjuvant), which of the standard options do you recommend and why?
- 9.Am I a candidate for Trastuzumab deruxtecan, Pertuzumab, and what side effects should I expect?
- 10.How do the results of DESTINY-Breast11 and PHERGain apply to someone like me?
- 11.For my situation (post-neoadjuvant, pathologic complete response), which of the standard options do you recommend and why?
- 12.Am I a candidate for Trastuzumab, Pertuzumab, and what side effects should I expect?
- 13.How do the results of APHINITY and HERA, NSABP B-31 & NCCTG N9831 (adjuvant trastuzumab) apply to someone like me?
- 14.For my situation (post-neoadjuvant, residual invasive disease), which of the standard options do you recommend and why?
- 15.Am I a candidate for Trastuzumab deruxtecan, Trastuzumab emtansine, Neratinib, and what side effects should I expect?
- 16.How do the results of DESTINY-Breast05 and KATHERINE apply to someone like me?
- 17.For my situation (adjuvant (upfront surgery), node-positive), which of the standard options do you recommend and why?
- 18.Am I a candidate for Pertuzumab, Trastuzumab, and what side effects should I expect?
- 19.How do the results of APHINITY and PERSEPHONE apply to someone like me?
- 20.For my situation (metastatic, first line), which of the standard options do you recommend and why?
- 21.Am I a candidate for Trastuzumab deruxtecan, Pertuzumab, Tucatinib or related drugs, and what side effects should I expect?
- 22.How do the results of DESTINY-Breast09 and CLEOPATRA apply to someone like me?
- 23.For my situation (metastatic, second line), which of the standard options do you recommend and why?
- 24.Am I a candidate for Trastuzumab deruxtecan, Tucatinib, and what side effects should I expect?
- 25.How do the results of DESTINY-Breast03 and HER2CLIMB apply to someone like me?
- 26.For my situation (metastatic, later lines), which of the standard options do you recommend and why?
- 27.Am I a candidate for Trastuzumab emtansine, Neratinib, Lapatinib or related drugs, and what side effects should I expect?
- 28.For my situation (brain metastases), which of the standard options do you recommend and why?
- 29.Am I a candidate for Tucatinib, Trastuzumab deruxtecan, and what side effects should I expect?
- 30.How do the results of HER2CLIMB and DESTINY-Breast12 apply to someone like me?
- 31.For my situation (cardiac monitoring and survivorship), which of the standard options do you recommend and why?
- 32.How do the results of PERSEPHONE apply to someone like me?
- 33.Are there clinical trials I could join, for example of HER2 PET, Zanidatamab, Disitamab vedotin, TQB2102?
- 34.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 35.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 36.I read that “Sequencing after T-DXd: no randomised data on which HER2 ADC or TKI works after TOP1-payload failure”. How does that affect my plan?
- 37.I read that “Interstitial lung disease with T-DXd in curative settings, where patients would otherwise be cured”. 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.
- 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.
- 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 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.
- Doing less to the armpit: Over thirty years surgeons went from clearing every lymph node in the armpit, to taking only the first one or two, to leaving even a cancerous node in place, to not operating on the armpit at all in low-risk cases.
- Breast reconstruction: Rebuilding the shape of a breast after a mastectomy, either with an implant or with the woman's own tissue, at the same operation or years later.
- Lymphoedema after breast cancer treatment: Swelling of the arm, hand or breast that happens when lymph fluid cannot drain because the lymph nodes have been removed or irradiated.
- Radiotherapy after mastectomy: Radiotherapy to the chest wall, and often the nearby lymph node areas, after the breast has been removed.
- Breast conservation or mastectomy: For most early breast cancers, removing the lump with a rim of healthy tissue and then giving radiotherapy leads to exactly the same chance of being alive in twenty years as removing the whole breast.
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
- Stage I (≤2-3 cm, node-negative): Surgery then weekly paclitaxel × 12 + trastuzumab × 1 year (APT); T-DM1 × 17 cycles is an alternative (ATEMPT). Endocrine therapy if HR+. (APT (adjuvant paclitaxel-trastuzumab), Paclitaxel / nab-paclitaxel, Trastuzumab, Trastuzumab emtansine)
- Stage II-III, neoadjuvant: TCHP (docetaxel, carboplatin, trastuzumab, pertuzumab) or anthracycline-taxane + HP; from 2026, T-DXd × 4 → THP (DESTINY-Breast11, pCR 67%). PET-adapted chemotherapy omission (PHERGain) in trials. (DESTINY-Breast11, Trastuzumab deruxtecan, Pertuzumab, PHERGain)
- Post-neoadjuvant, pathologic complete response: Complete 1 year of trastuzumab (± pertuzumab if node-positive at diagnosis); endocrine therapy if HR+; radiation per stage. (Trastuzumab, Pertuzumab, APHINITY, HERA, NSABP B-31 & NCCTG N9831 (adjuvant trastuzumab))
- Post-neoadjuvant, residual invasive disease: T-DXd (DESTINY-Breast05, iDFS HR 0.47 vs T-DM1; approved 2026) replacing T-DM1 (KATHERINE); consider extended adjuvant neratinib for HR+ high-risk. (DESTINY-Breast05, KATHERINE, Trastuzumab deruxtecan, Trastuzumab emtansine, Neratinib)
- Adjuvant (upfront surgery), node-positive: Chemotherapy + trastuzumab + pertuzumab for 1 year (APHINITY); trastuzumab alone for lower risk; 6 months acceptable where resources are limited (PERSEPHONE). (APHINITY, PERSEPHONE, Pertuzumab, Trastuzumab)
- Metastatic, first line: T-DXd + pertuzumab (DESTINY-Breast09, PFS 40.7 months; approved 2025) or taxane + trastuzumab + pertuzumab (CLEOPATRA) followed by maintenance: HP ± tucatinib (HER2CLIMB-05) and, if HR+, endocrine therapy + palbociclib (PATINA, approved 2026). (DESTINY-Breast09, CLEOPATRA, HER2CLIMB-05, Trastuzumab deruxtecan, Pertuzumab, Tucatinib, Palbociclib)
- Brain metastases: Systemic: tucatinib triplet or T-DXd (DESTINY-Breast12, intracranial ORR 72%); local: stereotactic radiosurgery or surgery for symptomatic or large lesions; whole-brain RT reserved. (HER2CLIMB, DESTINY-Breast12, Tucatinib, Trastuzumab deruxtecan, SBRT / SABR (stereotactic radiotherapy))
- Metastatic, second line: T-DXd if not used first line (DESTINY-Breast03, PFS HR 0.33 vs T-DM1); tucatinib + trastuzumab + capecitabine, especially with brain metastases (HER2CLIMB). (DESTINY-Breast03, HER2CLIMB, Trastuzumab deruxtecan, Tucatinib)
- Metastatic, later lines: T-DM1; neratinib or lapatinib + capecitabine; margetuximab + chemotherapy; trastuzumab + chemotherapy (continued HER2 blockade); zanidatamab and Chinese ADCs (trastuzumab rezetecan, disitamab vedotin) where available; trials. (Trastuzumab emtansine, Neratinib, Lapatinib, Margetuximab, Zanidatamab, Trastuzumab rezetecan, Disitamab vedotin)
- Cardiac monitoring and survivorship: LVEF every 3 months during anti-HER2 therapy; hold and cardioprotect for declines; anthracycline-free regimens preferred; long-term surveillance for late recurrence in HR+/HER2+. (Cardio-oncology, PERSEPHONE)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.