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Living with cancer· Appointment prep

Appointment sheet: Medullary thyroid cancer

One page to bring and write on: your details, the questions for Medullary thyroid cancer 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

Medullary thyroid cancer

Prepared with OnCo (onco.cc/prep/medullary-thyroid-cancer/). 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 Calcitonin and CEA, Germline RET testing in every patient, Somatic RET M918T, RAS mutations in RET-negative tumours), 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?
Hereditary RET carriers
  1. 5.For my situation (hereditary ret carriers), which of the standard options do you recommend and why?
Localised disease
  1. 6.For my situation (localised disease), which of the standard options do you recommend and why?
Advanced RET-mutant disease
  1. 7.For my situation (advanced ret-mutant disease), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Selpercatinib, Pralsetinib, and what side effects should I expect?
Advanced RET-negative disease
  1. 9.For my situation (advanced ret-negative disease), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Cabozantinib, Vandetanib, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Selpercatinib?
  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 “No cure once the disease has spread beyond the neck”. How does that affect my plan?
  5. 15.I read that “Resistance mutations to RET inhibitors (G810) are emerging”. How does that affect my plan?

Tests and results to bring

Biomarker results to ask for: Calcitonin and CEA (diagnosis, follow-up and doubling time), Germline RET testing in every patient, Somatic RET M918T, RAS mutations in RET-negative tumours.

Scans and tests linked to this cancer: Serum tumour markers: proper use and misuse, 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

  • Localised disease: Total thyroidectomy with central compartment dissection, lateral dissection when nodes are involved; no radioactive iodine; levothyroxine replacement only. (Thyroid cancer)
  • Hereditary RET carriers: Prophylactic total thyroidectomy in childhood, timed by the RET codon risk category (before age one in MEN2B). (RET, Multiple endocrine neoplasia syndromes (MEN1, MEN2, MEN4))
  • Advanced RET-mutant disease: Selpercatinib first line (LIBRETTO-531 beat cabozantinib and vandetanib); pralsetinib as an alternative. (Selpercatinib, Pralsetinib, RET)
  • Advanced RET-negative disease: Cabozantinib or vandetanib; external radiotherapy for local control; somatostatin analogues for diarrhoea from calcitonin. (Cabozantinib, Vandetanib)

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