Appointment sheet
Multiple endocrine neoplasia type 1 (MEN1)
Prepared with OnCo (onco.cc/prep/men1-syndrome/). 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
7 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 Germline MEN1 mutation, Calcium and parathyroid hormone, Gastrin, insulin and glucose, chromogranin A, Prolactin and insulin-like growth factor 1, Pancreatic and thymic imaging on the guideline surveillance schedule), 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 manifestations
- 5.For my situation (all manifestations), which of the standard options do you recommend and why?
Any stage
- 6.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 7.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- MEN1 and hereditary neuroendocrine syndromes: Inherited conditions (MEN1, VHL, NF1, tuberous sclerosis) that cause neuroendocrine tumours, often multiple and at a young age, so families need genetic testing and surveillance.
- Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.
Tests and results to bring
Biomarker results to ask for: Germline MEN1 mutation (first-degree relatives have a 50 percent risk), Calcium and parathyroid hormone, Gastrin, insulin and glucose, chromogranin A, Prolactin and insulin-like growth factor 1, Pancreatic and thymic imaging on the guideline surveillance schedule.
Scans and tests linked to this cancer: Germline (hereditary) testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- All manifestations: Treated by manifestation as the parent page describes, with germline testing of relatives and lifelong multidisciplinary surveillance. (Multiple endocrine neoplasia syndromes (MEN1, MEN2, MEN4), Germline (hereditary) testing, MEN1 and hereditary neuroendocrine syndromes)
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