OnCo

Sign in to keep your watchlist

Your watched pages live in this browser. Sign in with an email link and OnCo keeps the same list on every device you use. Only your email address and your watchlist are stored.

Living with cancer· Appointment prep

Appointment sheet: Grade 3 well-differentiated neuroendocrine tumour

One page to bring and write on: your details, the questions for Grade 3 well-differentiated neuroendocrine tumour 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

Grade 3 well-differentiated neuroendocrine tumour

Prepared with OnCo (onco.cc/prep/grade-3-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

19 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 above 20 percentwith well-differentiated morphology, Retained p53 and Rb by immunohistochemistry, Somatostatin receptor PET, usually positive, with FDG PET for dual-tracer assessment, Chromogranin A, MEN1, DAXX and ATRX alterations), 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
  1. 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Advanced, somatostatin receptor-positive
  1. 6.For my situation (advanced, somatostatin receptor-positive), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Lutetium-177 dotatate, Somatostatin analogues (octreotide, lanreotide), and what side effects should I expect?
  3. 8.How do the results of 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?
Advanced, shrinkage needed or receptor-negative
  1. 9.For my situation (advanced, shrinkage needed or receptor-negative), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Capecitabine + temozolomide (CAPTEM), Everolimus, Sunitinib or related drugs, and what side effects should I expect?
Trials
  1. 11.For my situation (trials), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for 177Lu-edotreotide, and what side effects should I expect?
  3. 13.How do the results of Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) - COMPOSE apply to someone like me?
Limited disease
  1. 14.For my situation (limited disease), which of the standard options do you recommend and why?
Any stage
  1. 15.Are there clinical trials I could join, for example of Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) - COMPOSE, 177Lu-edotreotide, Lutetium-177 dotatate, Capecitabine + temozolomide (CAPTEM)?
  2. 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 18.I read that “The Ki-67 boundary between grade 3 tumour and carcinoma is not sharp, and some cases can only be settled by molecular testing”. How does that affect my plan?
  5. 19.I read that “No trial has been run in grade 3 tumours alone; NETTER-2 and COMPOSE mix them with grade 2”. How does that affect my plan?

The words I may hear

Tests and results to bring

Diagnosis: Morphology, Ki-67 and p53 or Rb immunohistochemistry to separate grade 3 tumour from carcinoma; somatostatin receptor and FDG PET together.

Biomarker results to ask for: Ki-67 above 20 percent (usually 20 to 55 percent) with well-differentiated morphology, Retained p53 and Rb by immunohistochemistry (abnormal in carcinoma), Somatostatin receptor PET, usually positive, with FDG PET for dual-tracer assessment, Chromogranin A (monitoring), MEN1, DAXX and ATRX alterations (tumour lineage, research), MGMT status (CAPTEM response, investigational).

Scans and tests linked to this cancer: PET (positron emission tomography), 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