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Living with cancer· Appointment prep

Appointment sheet: Neuroendocrine tumours

One page to bring and write on: your details, the questions for Neuroendocrine tumours 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

Neuroendocrine tumours

Prepared with OnCo (onco.cc/prep/neuroendocrine/). 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

31 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 Ki-67 grade, SSTR PET uptake, Chromogranin A, MEN1, DAXX/ATRX, Ki-67 index and mitotic count), 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?
Localised
  1. 5.For my situation (localised), which of the standard options do you recommend and why?
Advanced
  1. 6.For my situation (advanced), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Lutetium-177 dotatate, Actinium-225 DOTATATE, and what side effects should I expect?
Diagnosis and staging
  1. 8.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Localised disease
  1. 9.For my situation (localised disease), which of the standard options do you recommend and why?
Advanced, grade 1-2, SSTR-positive, first line
  1. 10.For my situation (advanced, grade 1-2, sstr-positive, first line), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), Lutetium-177 dotatate, and what side effects should I expect?
  3. 12.How do the results of PROMID and CLARINET apply to someone like me?
Advanced, progression on SSA
  1. 13.For my situation (advanced, progression on ssa), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Lutetium-177 dotatate, 177Lu-edotreotide, Everolimus or related drugs, and what side effects should I expect?
  3. 15.How do the results of COMPETE and RADIANT-3 and RADIANT-4 apply to someone like me?
Advanced pancreatic NET needing tumour shrinkage
  1. 16.For my situation (advanced pancreatic net needing tumour shrinkage), which of the standard options do you recommend and why?
  2. 17.Am I a candidate for Capecitabine + temozolomide (CAPTEM), and what side effects should I expect?
Carcinoid syndrome
  1. 18.For my situation (carcinoid syndrome), which of the standard options do you recommend and why?
  2. 19.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), and what side effects should I expect?
Neuroendocrine carcinoma (poorly differentiated)
  1. 20.For my situation (neuroendocrine carcinoma (poorly differentiated)), which of the standard options do you recommend and why?
  2. 21.Am I a candidate for Carboplatin, Tarlatamab, Atezolizumab, and what side effects should I expect?
After PRRT failure
  1. 22.For my situation (after prrt failure), which of the standard options do you recommend and why?
  2. 23.Am I a candidate for Actinium-225 DOTATATE, 212Pb-DOTAMTATE, and what side effects should I expect?
  3. 24.How do the results of ACTION-1 apply to someone like me?
VHL-associated pancreatic NET
  1. 25.For my situation (vhl-associated pancreatic net), which of the standard options do you recommend and why?
  2. 26.Am I a candidate for Belzutifan, and what side effects should I expect?
Any stage
  1. 27.Are there clinical trials I could join, for example of Actinium-225 DOTATATE, PM8002, ZG006, Zanzalintinib?
  2. 28.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 29.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 30.I read that “Neuroendocrine carcinoma (high grade) behaves like SCLC”. How does that affect my plan?
  5. 31.I read that “Sequencing of PRRT vs targeted therapy”. How does that affect my plan?

The words I may hear

  • Alpha vs beta emitters: Beta particles (lutetium-177) travel millimetres and are good for bulky disease; alpha particles (actinium-225) travel a few cells' width and kill with far higher energy.
  • PRRT (peptide receptor radionuclide therapy): A radioactive drug for neuroendocrine tumours: a small peptide that homes to the somatostatin receptor on the tumour cells carries lutetium-177, which irradiates them from within.
  • Carcinoid syndrome and carcinoid heart disease: Flushing, diarrhoea and wheezing caused by hormones (mostly serotonin) released by some neuroendocrine tumours; over years it can scar the heart valves.
  • Chromogranin A: Chromogranin A is a protein released by neuroendocrine cells and measured in blood to follow tumour burden; it is unreliable because acid-reducing drugs and kidney disease also raise it.
  • Dosimetry: Measuring how much radiation dose each organ and tumour actually received from a radioactive drug.
  • 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.
  • TACE (transarterial chemoembolisation): Threading a catheter into the artery feeding a liver tumour and injecting chemotherapy plus particles that block the blood supply, starving and poisoning it at once.
  • Von Hippel-Lindau disease: Von Hippel-Lindau disease is an inherited condition causing kidney cancers, adrenal tumours, and blood-vessel tumours of the brain, spine, eye and pancreas from early adulthood.
  • Neuroendocrine tumour grade (Ki-67) and WHO classification: How fast the tumour cells are dividing, measured by Ki-67 staining, separates slow-growing neuroendocrine tumours from aggressive neuroendocrine carcinomas and decides the treatment.
  • Theranostics: Using the same targeting molecule for a diagnostic scan and a therapy, so you treat exactly what you can see.

Tests and results to bring

Diagnosis and staging: Histology with Ki-67 grading; 68Ga/64Cu-DOTATATE PET/CT ± FDG PET; triple-phase CT or MRI of the liver; chromogranin A and syndrome-specific hormones; germline testing for pancreatic NETs and paragangliomas.

Biomarker results to ask for: Ki-67 grade, SSTR PET uptake, Chromogranin A, MEN1, DAXX/ATRX, Ki-67 index and mitotic count (WHO grade), SSTR2 expression by 68Ga/64Cu-DOTATATE PET, FDG PET avidity (high-grade or dedifferentiated disease), Chromogranin A (monitoring), 24-hour urinary 5-HIAA (carcinoid syndrome), Germline MEN1, VHL, SDHx testing, MGMT status (CAPTEM response, investigational).

Scans and tests linked to this cancer: Germline (hereditary) testing, Histopathology & immunohistochemistry, PET (positron emission tomography), PET/CT, Serum tumour markers: proper use and misuse, Somatostatin receptor PET (68Ga/64Cu-DOTATATE).

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