Appointment sheet
Neuroendocrine neoplasms of the breast
Prepared with OnCo (onco.cc/prep/neuroendocrine-neoplasms-breast/). 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
9 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 Synaptophysin, chromogranin A and INSM1, Ki-67 and grade, Oestrogen and progesterone receptor, Exclusion of a lung or gut primary by imaging), 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?
Well-differentiated tumour
- 5.For my situation (well-differentiated tumour), which of the standard options do you recommend and why?
Small cell or large cell neuroendocrine carcinoma
- 6.For my situation (small cell or large cell neuroendocrine carcinoma), which of the standard options do you recommend and why?
- 7.Am I a candidate for Cisplatin, Etoposide, and what side effects should I expect?
Any stage
- 8.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 9.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
Tests and results to bring
Biomarker results to ask for: Synaptophysin, chromogranin A and INSM1, Ki-67 and grade, Oestrogen and progesterone receptor (positive in well-differentiated tumours), Exclusion of a lung or gut primary by imaging.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Well-differentiated tumour: Treated as HR-positive breast cancer. (HR-positive / HER2-negative breast cancer, Endocrine therapy (SERMs, AIs, SERDs))
- Small cell or large cell neuroendocrine carcinoma: Surgery and the extrapulmonary neuroendocrine carcinoma pathway (platinum and etoposide, radiotherapy); no standard exists. (Extrapulmonary neuroendocrine carcinoma, Cisplatin, Etoposide)
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