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Living with cancer· Appointment prep

Appointment sheet: Multiple endocrine neoplasia syndromes (MEN1, MEN2, MEN4)

One page to bring and write on: your details, the questions for Multiple endocrine neoplasia syndromes (MEN1, MEN2, MEN4) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Multiple endocrine neoplasia syndromes (MEN1, MEN2, MEN4)

Prepared with OnCo (onco.cc/prep/multiple-endocrine-neoplasia/). 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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

15 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Germline MEN1, RET or CDKN1B mutation, Calcitonin and CEA, Calcium and PTH, gastrin, fasting glucose and insulin, prolactin and IGF-1, Plasma metanephrines before any surgery, Pancreatic imaging), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
MEN2 carriers (RET-positive)
  1. 5.For my situation (men2 carriers (ret-positive)), which of the standard options do you recommend and why?
Advanced RET-mutant medullary thyroid carcinoma
  1. 6.For my situation (advanced ret-mutant medullary thyroid carcinoma), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Selpercatinib, Pralsetinib, Cabozantinib or related drugs, and what side effects should I expect?
  3. 8.How do the results of LIBRETTO-531 apply to someone like me?
MEN1 carriers
  1. 9.For my situation (men1 carriers), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), Everolimus, Sunitinib or related drugs, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Selpercatinib, LIBRETTO-531, Lutetium-177 dotatate, Everolimus?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “MEN1 has no menin-restoring or pathway-directed therapy; PanNET progression remains the main cause of death, addressed by earlier detection and NET therapies”. How does that affect my plan?
  5. 15.I read that “Timing and extent of pancreatic surgery in MEN1: prospective registries are comparing strategies”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: Germline MEN1, RET or CDKN1B mutation (diagnostic; codon defines MEN2 risk level), Calcitonin and CEA (MTC surveillance), Calcium and PTH, gastrin, fasting glucose and insulin, prolactin and IGF-1 (MEN1 surveillance), Plasma metanephrines before any surgery (pheochromocytoma exclusion), Pancreatic imaging (MRI, endoscopic ultrasound, 68Ga-DOTATATE PET).

Scans and tests linked to this cancer: Germline (hereditary) testing, Somatostatin receptor PET (68Ga/64Cu-DOTATATE), Thyroglobulin, calcitonin and CEA in thyroid cancer follow-up.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

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 browser
What I was told
Agreed next steps, dates and who to call