Appointment sheet
Large cell neuroendocrine carcinoma of the lung
Prepared with OnCo (onco.cc/prep/lung-lcnec/). 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
8 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 Neuroendocrine morphology with a high mitotic count and necrosis, recorded in the pathology report, Neuroendocrine differentiation confirmed by immunohistochemistry, TTF-1 and p40 to exclude adenocarcinoma and squamous cell carcinoma), 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?
Localised disease
- 5.For my situation (localised disease), which of the standard options do you recommend and why?
Advanced disease
- 6.For my situation (advanced disease), which of the standard options do you recommend and why?
Any stage
- 7.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 8.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- Resectability in lung cancer: Two separate questions are hidden in the word operable.
- Endobronchial ultrasound (EBUS-TBNA): A camera with an ultrasound probe on its tip is passed down the windpipe; the ultrasound finds the lymph nodes sitting just outside the airway wall and a needle is passed through the wall to sample them.
- Mediastinal lymph node stations: The lymph nodes in the chest are numbered by position on an agreed map, so that a scan, a needle biopsy and an operation in different hospitals all mean the same thing.
- TNM 9: what changed in lung cancer staging: Lung cancer has been staged by the ninth edition of TNM since 1 January 2025.
- Performance status (ECOG, Karnofsky): A simple score of how well a patient can get about and look after themselves: ECOG 0 is fully active, 1 restricted from strenuous work, 2 up more than half the day, 3 in bed more than half the day, 4 bedbound.
- TTF-1 and p40 (how lung histology is decided): The two stains that decide whether a poorly differentiated lung cancer is called adenocarcinoma or squamous cell carcinoma.
Tests and results to bring
Biomarker results to ask for: Neuroendocrine morphology with a high mitotic count and necrosis, recorded in the pathology report, Neuroendocrine differentiation confirmed by immunohistochemistry, TTF-1 and p40 to exclude adenocarcinoma and squamous cell carcinoma.
Scans and tests linked to this cancer: CT (computed tomography), Histopathology & immunohistochemistry, PET (positron emission tomography).
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: Resection where the tumour is resectable, staged by TNM 9 as for any other lung cancer, with adjuvant chemotherapy decided case by case; no randomised trial establishes the regimen, and teams differ over whether to use the small-cell or the non-small-cell backbone. (Resectability in lung cancer, TNM 9: what changed in lung cancer staging)
- Advanced disease: A platinum doublet, with the choice between the small-cell and the non-small-cell backbone made case by case; the parent and the small-cell page carry the regimens. (Small-cell lung cancer, Non-small-cell lung cancer)
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