Appointment sheet
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
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
8 on the sheetNewly diagnosed
- 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?
All stages
- 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?
Any stage
- 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
- 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.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call