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Living with cancer· Appointment prep

Appointment sheet: Pancreatic neuroendocrine tumours

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

Pancreatic neuroendocrine tumours

Prepared with OnCo (onco.cc/prep/pancreatic-net/). 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

24 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 index and mitotic count, Chromogranin A, Somatostatin receptor PET, Fasting glucose, insulin, C-peptide and proinsulin, Fasting gastrin and gastric pH), 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?
Diagnosis and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Gallium-68 DOTATATE (and Cu-64 DOTATATE), and what side effects should I expect?
Localised, resectable
  1. 7.For my situation (localised, resectable), which of the standard options do you recommend and why?
Functioning syndromes
  1. 8.For my situation (functioning syndromes), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), Everolimus, and what side effects should I expect?
Advanced, first line
  1. 10.For my situation (advanced, 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, Capecitabine + temozolomide (CAPTEM), and what side effects should I expect?
  3. 12.How do the results of CLARINET and Study to Evaluate the Efficacy and Safety of Lutathera in Patients With Grade 2 and Grade 3 Advanced GEP-NET apply to someone like me?
Progression on a somatostatin analogue
  1. 13.For my situation (progression on a somatostatin analogue), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Lutetium-177 dotatate, Everolimus, Sunitinib or related drugs, and what side effects should I expect?
  3. 15.How do the results of RADIANT-3 and RADIANT-4 and CABINET (Alliance A021602) apply to someone like me?
Liver-dominant disease
  1. 16.For my situation (liver-dominant disease), which of the standard options do you recommend and why?
VHL-associated pancreatic NET
  1. 17.For my situation (vhl-associated pancreatic net), which of the standard options do you recommend and why?
  2. 18.Am I a candidate for Belzutifan, and what side effects should I expect?
  3. 19.How do the results of Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL apply to someone like me?
Any stage
  1. 20.Are there clinical trials I could join, for example of 177Lu-edotreotide, COMPETE, Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) - COMPOSE, Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL?
  2. 21.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 22.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 23.I read that “The best order of radioligand therapy, everolimus, sunitinib, cabozantinib and CAPTEM is unknown”. How does that affect my plan?
  5. 24.I read that “Which small non-functioning tumours can safely be watched rather than resected”. How does that affect my plan?

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.
  • 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.
  • 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.
  • Whipple procedure (pancreaticoduodenectomy): The big operation for cancers of the head of the pancreas: the surgeon removes the pancreatic head, the duodenum, the gallbladder and part of the bile duct, then reconnects everything.
  • 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.
  • Liver-directed therapy (TACE, TARE, HAI, ablation): The set of treatments aimed only at tumours in the liver, delivered through its artery or by needle, used when the liver is the main or only site of disease: chemoembolisation, radioactive beads, ablation and infusion pumps.
  • Hepatectomy (liver resection): Cutting out the part of the liver containing tumour.

Tests and results to bring

Diagnosis and staging: Contrast CT or MRI, somatostatin receptor PET, biopsy with Ki-67 grading, chromogranin A, hormone assays where a syndrome is suspected, and germline testing.

Biomarker results to ask for: Ki-67 index and mitotic count (WHO grade), Chromogranin A (monitoring), Somatostatin receptor PET (staging and radioligand eligibility), Fasting glucose, insulin, C-peptide and proinsulin (insulinoma), Fasting gastrin and gastric pH (gastrinoma), Germline MEN1, VHL, NF1 and TSC testing, MEN1, DAXX and ATRX status in the tumour (prognostic, research), MGMT status (CAPTEM response, investigational).

Scans and tests linked to this cancer: Germline (hereditary) testing, PET/CT, 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