Appointment sheet
Multiple endocrine neoplasia type 2 (MEN2A and MEN2B)
Prepared with OnCo (onco.cc/prep/men2-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
10 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 RET mutation and its ATA risk category, Serum calcitonin and carcinoembryonic antigen, Plasma or urine metanephrines before any surgery, Calcium and parathyroid hormone), 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?
Gene carriers
- 5.For my situation (gene carriers), which of the standard options do you recommend and why?
Established medullary thyroid carcinoma
- 6.For my situation (established medullary thyroid carcinoma), which of the standard options do you recommend and why?
- 7.Am I a candidate for Selpercatinib, and what side effects should I expect?
- 8.How do the results of LIBRETTO-531 apply to someone like me?
Any stage
- 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 10.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- Thyroidectomy: Removing all (total) or half (hemi-) of the thyroid gland, after which thyroid hormone tablets replace its function.
- 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 RET mutation and its ATA risk category (highest, high, moderate), Serum calcitonin and carcinoembryonic antigen, Plasma or urine metanephrines before any surgery, Calcium and parathyroid hormone.
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
- Gene carriers: Prophylactic thyroidectomy timed by RET risk category, after excluding phaeochromocytoma (ATA 2015). (Thyroidectomy, RET, Medullary thyroid cancer)
- Established medullary thyroid carcinoma: Treated as the medullary thyroid cancer page describes; selpercatinib for advanced RET-driven disease (LIBRETTO-531). (Medullary thyroid cancer, Selpercatinib, LIBRETTO-531)
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