Invasive lobular carcinoma of the breast
Prepared with OnCo (onco.cc/prep/invasive-lobular-carcinoma/). 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
8 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 E-cadherin loss on immunohistochemistry and CDH1 inactivation, Oestrogen and progesterone receptor, HER2, PTEN, TBX3 and FOXA1 mutations, Extent on MRI or contrast-enhanced mammography before surgery), 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 (all stages), which of the standard options do you recommend and why?
- 6.Am I a candidate for Tamoxifen, Letrozole (and other aromatase inhibitors), and what side effects should I expect?
- 7.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 8.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- Tumour size on a breast report, and why it differs from the scan: The size on the pathology report is the largest continuous lump of invasive cancer measured under the microscope, which is not the same as the size on the mammogram or the MRI.
- Nottingham Prognostic Index (NPI), and PREDICT: One number that puts a breast cancer's size, its node status and its grade together, because the stage on its own leaves grade out.
- Ducts, lobules and the terminal duct lobular unit: The breast is a tree: fifteen to twenty branching duct systems, each ending in a cluster of milk-making sacs called a lobule.
- Nottingham grade (breast cancer grade 1, 2 and 3): The grade on a breast report is a sum of three scores: how much of the tumour still forms tubes, how ugly its nuclei are, and how many cells are caught dividing.
- The WHO classification of breast tumours, and what the 6th edition changed: The book that decides what a breast tumour is called.
- 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: E-cadherin loss on immunohistochemistry and CDH1 inactivation, Oestrogen and progesterone receptor (almost always positive), HER2 (usually negative), PTEN, TBX3 and FOXA1 mutations (enriched), Extent on MRI or contrast-enhanced mammography before surgery.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- All stages: Treated as HR-positive breast cancer: surgery planned with MRI, endocrine therapy, CDK4/6 inhibitors in advanced disease; sentinel node biopsy as in ductal disease. (HR-positive / HER2-negative breast cancer, Endocrine therapy (SERMs, AIs, SERDs), CDK4/6 inhibitors, Tamoxifen, Letrozole (and other aromatase inhibitors), Mastectomy)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.