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Living with cancer· Appointment prep

Appointment sheet: Small intestinal neuroendocrine tumours

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

Small intestinal neuroendocrine tumours

Prepared with OnCo (onco.cc/prep/small-intestinal-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

23 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, 24-hour urinary 5-HIAA, Somatostatin receptor PET with gallium-68 or copper-64 DOTATATE, Echocardiography for carcinoid heart disease), 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 or resectable disease
  1. 7.For my situation (localised or resectable disease), which of the standard options do you recommend and why?
Advanced, first line
  1. 8.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), Lutetium-177 dotatate, and what side effects should I expect?
  3. 10.How do the results of PROMID and CLARINET apply to someone like me?
Progression on a somatostatin analogue
  1. 11.For my situation (progression on a somatostatin analogue), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Lutetium-177 dotatate, Everolimus, Cabozantinib, and what side effects should I expect?
  3. 13.How do the results of NETTER-1 and RADIANT-3 and RADIANT-4 apply to someone like me?
Carcinoid syndrome
  1. 14.For my situation (carcinoid syndrome), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), Telotristat ethyl, and what side effects should I expect?
After radioligand therapy
  1. 16.For my situation (after radioligand therapy), which of the standard options do you recommend and why?
  2. 17.Am I a candidate for Everolimus, Cabozantinib, 177Lu-edotreotide or related drugs, and what side effects should I expect?
  3. 18.How do the results of COMPETE and ACTION-1 apply to someone like me?
Any stage
  1. 19.Are there clinical trials I could join, for example of 177Lu-edotreotide, COMPETE, Actinium-225 DOTATATE, ACTION-1?
  2. 20.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 21.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 22.I read that “No randomised trial orders radioligand therapy, everolimus and cabozantinib after somatostatin analogues”. How does that affect my plan?
  5. 23.I read that “Whether removing the primary improves survival in patients with liver metastases has never been tested prospectively”. How does that affect my plan?

The words I may hear

  • 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.
  • 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.
  • 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: Biopsy with Ki-67 grading, somatostatin receptor PET, cross-sectional imaging of the liver, chromogranin A and urinary 5-HIAA, echocardiography if carcinoid syndrome is present.

Biomarker results to ask for: Ki-67 index and mitotic count (WHO grade, nearly always grade 1 or 2), Chromogranin A (monitoring, raised by proton-pump inhibitors and kidney disease), 24-hour urinary 5-HIAA (carcinoid syndrome), Somatostatin receptor PET with gallium-68 or copper-64 DOTATATE (staging and radioligand eligibility), Echocardiography for carcinoid heart disease, Germline CDKN1B in familial small intestinal NET (rare).

Scans and tests linked to this cancer: 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