The first 60 days: Neuroendocrine carcinoma of the gallbladder
Neuroendocrine carcinoma is a rare, fast-growing form of gallbladder cancer made of small cell or large cell hormone-type cells, often mixed with ordinary adenocarcinoma. It is usually advanced when found and median survival in the largest series was six to seven months. It is treated like other high-grade neuroendocrine carcinomas rather than like gallbladder adenocarcinoma. Below, week by week, is what OnCo's record of Neuroendocrine carcinoma of the gallbladder 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.
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.
- SurgeonNamed in the standard of care for: Localised disease.
- Medical oncologistNamed in the standard of care for: Localised disease, Advanced disease.
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.
Resection as for gallbladder cancer where feasible; surgery and adjuvant chemotherapy were each associated with better survival in population data.
Platinum and etoposide chemotherapy as for other extrapulmonary neuroendocrine carcinomas, rather than the gemcitabine and cisplatin used for adenocarcinoma.
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 Synaptophysin, chromogranin A and CD56 on immunohistochemistry, Ki-67 proliferation index, Loss of pRB or p16 and mutant-pattern p53, Serum chromogranin A, Share of neuroendocrine versus adenocarcinoma component), 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 Small cell neuroendocrine carcinoma of the gallbladder, Large cell neuroendocrine carcinoma of the gallbladder, Mixed neuroendocrine and non-neuroendocrine neoplasm of the gallbladder.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Localised disease
- For my situation (localised disease), which of the standard options do you recommend and why?Guideline options include: Resection as for gallbladder cancer where feasible; surgery and adjuvant chemotherapy were each associated with better survival in population data.
Advanced disease
- For my situation (advanced disease), which of the standard options do you recommend and why?Guideline options include: Platinum and etoposide chemotherapy as for other extrapulmonary neuroendocrine carcinomas, rather than the gemcitabine and cisplatin used for adenocarcinoma.
- Am I a candidate for Cisplatin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- 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.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Neuroendocrine carcinoma of the gallbladder: the full pageNeuroendocrine carcinoma is a rare, fast-growing form of gallbladder cancer made of small cell or large cell hormone-type cells, often mixed with ordinary adenocarcinoma. It is usually advanced when found and median survival in the largest series was six to seven months. It is treated like other high-grade neuroendocrine carcinomas rather than like gallbladder adenocarcinoma.
- 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.
- Lymphovascular invasion (LVI): The pathologist has seen cancer cells inside small lymph or blood vessels in the removed tissue: a sign the tumour has found the exit routes, even if the nodes are clear.
- Perineural invasion (PNI): Cancer cells growing along the sheath of a nerve.
- Radical (extended) cholecystectomy: The cancer operation for gallbladder cancer: the gallbladder (if still present) is removed together with a rim of the liver it sits against and the lymph nodes along the bile duct and liver blood vessels.
- Grade: How abnormal the cancer cells look under the microscope, from grade 1 (close to normal, slow) to grade 3 or 4 (wildly abnormal, fast).
Every term links to the glossary.