Inflammatory breast cancer
Prepared with OnCo (onco.cc/prep/inflammatory-breast-cancer/). 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
18 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 Clinical criteria: rapid onset, erythema and oedema over at least a third of the breast, Dermal lymphatic tumour emboli on skin punch biopsy, Oestrogen receptor, progesterone receptor and HER2, PET-CT staging for distant disease at diagnosis, Response on examination and imaging after neoadjuvant chemotherapy), 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 (diagnosis and staging), which of the standard options do you recommend and why?
- 6.For my situation (systemic therapy first), which of the standard options do you recommend and why?
- 7.Am I a candidate for Doxorubicin, Paclitaxel / nab-paclitaxel, Trastuzumab or related drugs, and what side effects should I expect?
- 8.How do the results of KEYNOTE-522 apply to someone like me?
- 9.For my situation (surgery), which of the standard options do you recommend and why?
- 10.For my situation (radiotherapy), which of the standard options do you recommend and why?
- 11.For my situation (after trimodality treatment), which of the standard options do you recommend and why?
- 12.Am I a candidate for Tamoxifen, Letrozole (and other aromatase inhibitors), Trastuzumab emtansine or related drugs, and what side effects should I expect?
- 13.How do the results of KATHERINE and DESTINY-Breast05 apply to someone like me?
- 14.Are there clinical trials I could join, for example of Pembrolizumab, Trastuzumab deruxtecan, Sacituzumab govitecan, MRD / molecular residual disease testing?
- 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 17.I read that “Diagnosis is delayed because the picture is mistaken for infection”. How does that affect my plan?
- 18.I read that “No molecular driver of the inflammatory phenotype has been found”. How does that affect my plan?
The words I may hear
- Core needle biopsy and fine-needle aspiration (FNA): Taking a sliver of tissue (core) or a few cells (fine-needle aspiration) through a needle guided by ultrasound, CT or MRI, to diagnose the cancer and test its markers without surgery.
- 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
Diagnosis and staging: Skin punch biopsy and core biopsy with receptor testing, clinical photography, bilateral mammography and ultrasound, and PET-CT or CT with bone scan because distant spread is common at presentation.
Biomarker results to ask for: Clinical criteria: rapid onset, erythema and oedema over at least a third of the breast (T4d), Dermal lymphatic tumour emboli on skin punch biopsy (supportive, not required), Oestrogen receptor, progesterone receptor and HER2 (a higher share are HER2-positive or triple-negative), PET-CT staging for distant disease at diagnosis, Response on examination and imaging after neoadjuvant chemotherapy, Germline BRCA1 and BRCA2 in younger and triple-negative cases.
Scans and tests linked to this cancer: Histopathology & immunohistochemistry, Liquid biopsy (ctDNA), Mammography & tomosynthesis, PET (positron emission tomography), Ultrasound, MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Surgery: Modified radical mastectomy with axillary dissection after response to chemotherapy; breast conservation, sentinel node biopsy alone and skin-sparing approaches are avoided, and reconstruction is deferred until after radiotherapy. (Mastectomy)
- Systemic therapy first: Anthracycline and taxane chemotherapy; trastuzumab and pertuzumab throughout for HER2-positive disease; pembrolizumab-based chemotherapy for triple-negative disease by extrapolation from KEYNOTE-522. (Doxorubicin, Paclitaxel / nab-paclitaxel, Trastuzumab, Pertuzumab, Pembrolizumab, KEYNOTE-522)
- Radiotherapy: Post-mastectomy radiotherapy to the chest wall and regional nodes in every patient, with bolus and often a higher dose for poor responders. (IMRT / IGRT (modern external beam))
- After trimodality treatment: Endocrine therapy for hormone receptor-positive disease; trastuzumab emtansine or trastuzumab deruxtecan for residual HER2-positive disease (KATHERINE, DESTINY-Breast05); olaparib or capecitabine for residual triple-negative disease as in non-inflammatory cancer. (Tamoxifen, Letrozole (and other aromatase inhibitors), Trastuzumab emtansine, Trastuzumab deruxtecan, KATHERINE, DESTINY-Breast05, Olaparib, Capecitabine, OlympiA)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.