Appointment sheet
Lung neuroendocrine tumours (typical and atypical carcinoid)
Prepared with OnCo (onco.cc/prep/lung-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
20 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Mitotic count and necrosis, Ki-67 index, Somatostatin receptor PET, Chromogranin A, ACTH and cortisol where Cushing's syndrome is suspected), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis and staging
- 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
- 6.Am I a candidate for Gallium-68 DOTATATE (and Cu-64 DOTATATE), and what side effects should I expect?
Localised disease
- 7.For my situation (localised disease), which of the standard options do you recommend and why?
Advanced, somatostatin receptor-positive, slow tempo
- 8.For my situation (advanced, somatostatin receptor-positive, slow tempo), which of the standard options do you recommend and why?
- 9.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), and what side effects should I expect?
- 10.How do the results of CLARINET apply to someone like me?
Advanced, progressive
- 11.For my situation (advanced, progressive), which of the standard options do you recommend and why?
- 12.Am I a candidate for Everolimus, Cabozantinib, Lutetium-177 dotatate or related drugs, and what side effects should I expect?
- 13.How do the results of RADIANT-3 and RADIANT-4 and CABINET (Alliance A021602) apply to someone like me?
Hormone syndromes
- 14.For my situation (hormone syndromes), which of the standard options do you recommend and why?
- 15.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), and what side effects should I expect?
Any stage
- 16.Are there clinical trials I could join, for example of CABINET (Alliance A021602), Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors, Peptide receptor radionuclide therapy (PRRT), Somatostatin receptor PET (68Ga/64Cu-DOTATATE)?
- 17.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 18.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 19.I read that “No randomised trial has tested somatostatin analogues or radioligand therapy specifically in lung neuroendocrine tumours”. How does that affect my plan?
- 20.I read that “Lung and gastroenteropancreatic grading systems disagree, so trial eligibility and guideline advice do not map cleanly”. 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.
- Lobectomy: Removing one lobe of the lung (the right lung has three, the left two).
- Bronchoscopy (EBUS, robotic navigation): Passing a camera down the windpipe into the lungs to biopsy tumours and lymph nodes without surgery.
- 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.
Tests and results to bring
Diagnosis and staging: Bronchoscopy with biopsy for central tumours, CT of the chest and abdomen, somatostatin receptor PET, and pathology graded by mitotic count and necrosis.
Biomarker results to ask for: Mitotic count and necrosis (WHO typical versus atypical), Ki-67 index (supportive, not definitional in the lung), Somatostatin receptor PET (staging and somatostatin analogue or radioligand eligibility), Chromogranin A (monitoring), ACTH and cortisol where Cushing's syndrome is suspected, Germline MEN1 in young or multiple tumours.
Scans and tests linked to this cancer: CT (computed tomography), 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
- Localised disease: Lobectomy or sleeve resection with systematic nodal dissection; endobronchial resection for patients unfit for surgery; no adjuvant therapy. (Lobectomy, Robotic & minimally invasive surgery)
- Advanced, somatostatin receptor-positive, slow tempo: Octreotide or lanreotide, by extrapolation from gut trials and the SPINET study. (Somatostatin analogues (octreotide, lanreotide), CLARINET)
- Advanced, progressive: Everolimus (RADIANT-4); cabozantinib (CABINET); lutetium-177 dotatate off-label for receptor-positive tumours; temozolomide-based chemotherapy for atypical carcinoids needing shrinkage. (Everolimus, RADIANT-3 and RADIANT-4, Cabozantinib, CABINET (Alliance A021602), Lutetium-177 dotatate, Peptide receptor radionuclide therapy (PRRT), Capecitabine + temozolomide (CAPTEM))
- Hormone syndromes: Somatostatin analogues for carcinoid syndrome; steroidogenesis inhibitors or resection for ectopic ACTH. (Somatostatin analogues (octreotide, lanreotide), Carcinoid syndrome and carcinoid heart disease)
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 browserWhat I was told
Agreed next steps, dates and who to call