The first 60 days: Lung neuroendocrine tumours (typical and atypical carcinoid)
Lung neuroendocrine tumours, called typical and atypical carcinoids, are slow-growing tumours of the airways that are usually cured by surgery. When they spread, everolimus is the one drug tested in a randomised trial for this site, cabozantinib was approved in 2025, and somatostatin analogues and lutetium radioligand therapy are borrowed from gut tumours. Below, week by week, is what OnCo's record of Lung neuroendocrine tumours (typical and atypical carcinoid) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Bronchoscopy with biopsy for central tumours, CT of the chest and abdomen, somatostatin receptor PET, and pathology graded by mitotic count and necrosis.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Diagnosis and staging.
- RadiologistNamed in the standard of care for: Diagnosis and staging.
- SurgeonNamed in the standard of care for: Localised disease, Hormone syndromes.
- Medical oncologistNamed in the standard of care for: Diagnosis and staging, Localised disease, Advanced, somatostatin receptor-positive, slow tempo, Advanced, progressive and 1 more.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Diagnosis and staging, Advanced, progressive.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Lobectomy or sleeve resection with systematic nodal dissection; endobronchial resection for patients unfit for surgery; no adjuvant therapy.
- 2.Advanced, somatostatin receptor-positive, slow tempoNCCN Guidelines: Neuroendocrine and Adrenal Tumors
Octreotide or lanreotide, by extrapolation from gut trials and the SPINET study.
Everolimus (RADIANT-4); cabozantinib (CABINET); lutetium-177 dotatate off-label for receptor-positive tumours; temozolomide-based chemotherapy for atypical carcinoids needing shrinkage.
Somatostatin analogues for carcinoid syndrome; steroidogenesis inhibitors or resection for ectopic ACTH.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Typical carcinoid of the central bronchus, Atypical carcinoid, Peripheral lung neuroendocrine tumour.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Diagnosis and staging
- For my situation (diagnosis and staging), which of the standard options do you recommend and why?Guideline options include: Bronchoscopy with biopsy for central tumours, CT of the chest and abdomen, somatostatin receptor PET, and pathology graded by mitotic count and necrosis.
- Am I a candidate for Gallium-68 DOTATATE (and Cu-64 DOTATATE), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Localised disease
- For my situation (localised disease), which of the standard options do you recommend and why?Guideline options include: Lobectomy or sleeve resection with systematic nodal dissection; endobronchial resection for patients unfit for surgery; no adjuvant therapy.
Advanced, somatostatin receptor-positive, slow tempo
- For my situation (advanced, somatostatin receptor-positive, slow tempo), which of the standard options do you recommend and why?Guideline options include: Octreotide or lanreotide, by extrapolation from gut trials and the SPINET study.
- Am I a candidate for Somatostatin analogues (octreotide, lanreotide), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of CLARINET apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Advanced, progressive
- For my situation (advanced, progressive), which of the standard options do you recommend and why?Guideline options include: Everolimus (RADIANT-4); cabozantinib (CABINET); lutetium-177 dotatate off-label for receptor-positive tumours; temozolomide-based chemotherapy for atypical carcinoids needing shrinkage.
- Am I a candidate for Everolimus, Cabozantinib, Lutetium-177 dotatate or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of RADIANT-3 and RADIANT-4 and CABINET (Alliance A021602) apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Hormone syndromes
- For my situation (hormone syndromes), which of the standard options do you recommend and why?Guideline options include: Somatostatin analogues for carcinoid syndrome; steroidogenesis inhibitors or resection for ectopic ACTH.
- Am I a candidate for Somatostatin analogues (octreotide, lanreotide), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- 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)?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “No randomised trial has tested somatostatin analogues or radioligand therapy specifically in lung neuroendocrine tumours”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- 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?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Lung neuroendocrine tumours (typical and atypical carcinoid): the full pageLung neuroendocrine tumours, called typical and atypical carcinoids, are slow-growing tumours of the airways that are usually cured by surgery. When they spread, everolimus is the one drug tested in a randomised trial for this site, cabozantinib was approved in 2025, and somatostatin analogues and lutetium radioligand therapy are borrowed from gut tumours.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.