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Living with cancer· Appointment prep

Appointment sheet: Extrapulmonary neuroendocrine carcinoma

One page to bring and write on: your details, the questions for Extrapulmonary neuroendocrine carcinoma 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

Extrapulmonary neuroendocrine carcinoma

Prepared with OnCo (onco.cc/prep/extrapulmonary-nec/). 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 percent, usually far higher, with poorly differentiated morphology, Synaptophysin, chromogranin and INSM1 by immunohistochemistry, p53 and Rb by immunohistochemistry, FDG PET, DLL3 expression), 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?
Localised disease
  1. 6.For my situation (localised disease), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Platinum + etoposide (EP / CE), Etoposide, Cisplatin or related drugs, and what side effects should I expect?
Metastatic, first line
  1. 8.For my situation (metastatic, first line), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Platinum + etoposide (EP / CE), Etoposide, Carboplatin or related drugs, and what side effects should I expect?
Second line
  1. 10.For my situation (second line), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for FOLFIRI (5-FU, leucovorin, irinotecan), FOLFOX (5-FU, leucovorin, oxaliplatin), Capecitabine + temozolomide (CAPTEM) or related drugs, and what side effects should I expect?
  3. 12.How do the results of DART (SWOG S1609): nivolumab plus ipilimumab in rare tumours and DAREON®-NEC-1: A Study in People With Advanced Extrapulmonary Neuroendocrine Cancer (epNEC) to Compare Obrixtamig Plus Carboplatin and Etoposide Treatment With Standard Chemotherapy apply to someone like me?
Ki-67 near 20 to 55 percent with well-differentiated features
  1. 13.For my situation (ki-67 near 20 to 55 percent with well-differentiated features), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Capecitabine + temozolomide (CAPTEM), Lutetium-177 dotatate, and what side effects should I expect?
Any stage
  1. 15.Are there clinical trials I could join, for example of DAREON®-NEC-1: A Study in People With Advanced Extrapulmonary Neuroendocrine Cancer (epNEC) to Compare Obrixtamig Plus Carboplatin and Etoposide Treatment With Standard Chemotherapy, DAREON™-5: A Study to Test Whether Different Doses of BI 764532 Help People With Small Cell Lung Cancer or Other Neuroendocrine Cancers, A Study of Peluntamig (PT217) in Patients With Neuroendocrine Carcinomas Expressing DLL3 (the SKYBRIDGE Study), Peluntamig?
  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 “No randomised trial has improved on platinum-etoposide in first line”. How does that affect my plan?
  5. 19.I read that “Whether adding a PD-1 or PD-L1 antibody helps, as it does in small-cell lung cancer, is untested in a phase 3”. How does that affect my plan?

The words I may hear

Tests and results to bring

Diagnosis and staging: Biopsy with Ki-67, morphology and p53 or Rb immunohistochemistry to separate carcinoma from grade 3 tumour; FDG PET and CT; somatostatin receptor PET only if radioligand therapy is contemplated.

Biomarker results to ask for: Ki-67 above 20 percent, usually far higher, with poorly differentiated morphology, Synaptophysin, chromogranin and INSM1 by immunohistochemistry (chromogranin may be weak), p53 and Rb by immunohistochemistry (abnormal in carcinoma, retained in grade 3 tumour), FDG PET (somatostatin receptor PET usually negative), DLL3 expression (trial eligibility), BRAF V600E and microsatellite instability in colorectal NEC, Ki-67 above or below 55 percent (platinum sensitivity, NORDIC NEC).

Scans and tests linked to this cancer: CT (computed tomography), PET (positron emission tomography), Somatostatin receptor PET (68Ga/64Cu-DOTATATE), MRD / molecular residual disease testing.

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