Appointment sheet
Biliary tract cancer (cholangiocarcinoma)
Prepared with OnCo (onco.cc/prep/cholangiocarcinoma/). 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
32 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 FGFR2 fusions, IDH1, HER2, NRG1, MSI), 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?
Resectable
- 5.For my situation (resectable), which of the standard options do you recommend and why?
- 9.For my situation (resectable), which of the standard options do you recommend and why?
- 10.How do the results of BILCAP apply to someone like me?
Advanced
- 6.For my situation (advanced), which of the standard options do you recommend and why?
- 7.Am I a candidate for Durvalumab, Pembrolizumab, Zanidatamab or related drugs, and what side effects should I expect?
Diagnosis and staging
- 8.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Unresectable perihilar in selected patients
- 11.For my situation (unresectable perihilar in selected patients), which of the standard options do you recommend and why?
Advanced, first line
- 12.For my situation (advanced, first line), which of the standard options do you recommend and why?
- 13.Am I a candidate for Gemcitabine + cisplatin, Durvalumab, Pembrolizumab, and what side effects should I expect?
- 14.How do the results of TOPAZ-1 and KEYNOTE-966 apply to someone like me?
Advanced, FGFR2 fusion after chemotherapy
- 15.For my situation (advanced, fgfr2 fusion after chemotherapy), which of the standard options do you recommend and why?
- 16.Am I a candidate for Pemigatinib, Futibatinib, Tinengotinib, and what side effects should I expect?
- 17.How do the results of FIGHT-202 and FOENIX-CCA2 apply to someone like me?
Advanced, IDH1 mutation after chemotherapy
- 18.For my situation (advanced, idh1 mutation after chemotherapy), which of the standard options do you recommend and why?
- 19.Am I a candidate for Ivosidenib, and what side effects should I expect?
- 20.How do the results of ClarIDHy apply to someone like me?
Advanced, HER2-positive after chemotherapy
- 21.For my situation (advanced, her2-positive after chemotherapy), which of the standard options do you recommend and why?
- 22.Am I a candidate for Zanidatamab, Trastuzumab deruxtecan, and what side effects should I expect?
Advanced, other alterations
- 23.For my situation (advanced, other alterations), which of the standard options do you recommend and why?
- 24.Am I a candidate for Zenocutuzumab, Dabrafenib + trametinib, Pembrolizumab or related drugs, and what side effects should I expect?
Second-line, no target
- 25.For my situation (second-line, no target), which of the standard options do you recommend and why?
- 26.How do the results of NALIRICC (AIO) apply to someone like me?
Locoregional (intrahepatic, liver-confined)
- 27.For my situation (locoregional (intrahepatic, liver-confined)), which of the standard options do you recommend and why?
Any stage
- 28.Are there clinical trials I could join, for example of Zenocutuzumab, SHR-8068, TQB2102, D07001?
- 29.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 30.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 31.I read that “FGFR inhibitor resistance”. How does that affect my plan?
- 32.I read that “Late diagnosis”. How does that affect my plan?
The words I may hear
- FGFR2 fusions and rearrangements: A broken-and-rejoined FGFR2 gene that drives about one in eight intrahepatic bile duct cancers and can be switched off with pills.
- Intrahepatic, perihilar, distal and gallbladder cancer: Bile duct cancers are named by where they start: inside the liver, at the hilum where the ducts join, in the lower duct near the pancreas, or in the gallbladder.
- Stenting (biliary, oesophageal, airway): Placing a small mesh or plastic tube to hold open a duct or passage that a tumour is squeezing shut, relieving jaundice, swallowing difficulty or breathlessness.
- Whipple procedure (pancreaticoduodenectomy): The big operation for cancers of the head of the pancreas: the surgeon removes the pancreatic head, the duodenum, the gallbladder and part of the bile duct, then reconnects everything.
- Hepatectomy (liver resection): Cutting out the part of the liver containing tumour.
- CA 19-9: A sugar molecule shed into the blood by most pancreatic cancers; useful to follow treatment, not to screen.
- Obstructive jaundice and biliary obstruction: Yellowing of the skin and eyes because a tumour blocks the bile duct, most often pancreatic or bile duct cancer.
- Gene fusion: A gene fusion is two genes broken and joined together, creating a hybrid protein that can drive cancer.
- Tumour-agnostic (tissue-agnostic) approval: A tumour-agnostic approval lets a drug be used for any cancer carrying a specific molecular feature, regardless of where it started.
- Endoscopy (EGD, EUS, ERCP): Looking inside a hollow organ with a camera on a flexible tube, taking biopsies and sometimes treating on the spot.
Tests and results to bring
Diagnosis and staging: Contrast CT/MRI with MRCP; ERCP or EUS-guided biopsy; molecular profiling (DNA + RNA NGS) for all advanced disease; biliary drainage if jaundiced.
Biomarker results to ask for: FGFR2 fusions (~15% intrahepatic), IDH1 (~15%), HER2 (~15% extrahepatic/gallbladder), NRG1, MSI, BRAF, FGFR2 fusions/rearrangements (RNA or DNA NGS), IDH1 mutation, HER2 amplification / IHC 3+, NRG1 fusion, BRAF V600E, MSI/dMMR, KRAS, TP53 (prognostic), CA 19-9 (monitoring), PD-L1 (not predictive so far).
Scans and tests linked to this cancer: Companion diagnostics, Comprehensive genomic profiling, Endoscopic ultrasound and EBUS systems, Liquid biopsy (ctDNA), MRI, RNA sequencing & expression profiling.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable: Surgery + adjuvant capecitabine.
- Resectable: Margin-negative resection (hepatectomy, Whipple, or radical cholecystectomy) with lymphadenectomy; adjuvant capecitabine 6 months (BILCAP). (BILCAP, Robotic & minimally invasive surgery)
- Unresectable perihilar in selected patients: Neoadjuvant chemoradiation then liver transplantation (Mayo protocol) at experienced centres. (Liver transplantation for cancer (Milan criteria and beyond))
- Advanced: Gem-cis + PD-(L)1; targeted therapy by genotype second line. (Durvalumab, Pembrolizumab, Zanidatamab, Zenocutuzumab, Trastuzumab deruxtecan)
- Advanced, first line: Gemcitabine-cisplatin + durvalumab (TOPAZ-1) or + pembrolizumab (KEYNOTE-966); zanidatamab added in HER2+ disease within HERIZON-BTC-302. (TOPAZ-1, KEYNOTE-966, Gemcitabine + cisplatin, Durvalumab, Pembrolizumab, HERIZON-BTC-302)
- Advanced, FGFR2 fusion after chemotherapy: Pemigatinib or futibatinib; tinengotinib in FIRST-308 after progression. (Pemigatinib, Futibatinib, Tinengotinib, FIGHT-202, FOENIX-CCA2, FIRST-308)
- Advanced, IDH1 mutation after chemotherapy: Ivosidenib (ClarIDHy). (Ivosidenib, ClarIDHy)
- Advanced, HER2-positive after chemotherapy: Zanidatamab (IHC 3+ or amplified); trastuzumab deruxtecan (IHC 3+, tumour-agnostic). (Zanidatamab, Trastuzumab deruxtecan)
- Advanced, other alterations: Zenocutuzumab (NRG1 fusion, approved 2026); dabrafenib-trametinib (BRAF V600E); pembrolizumab or dostarlimab (MSI-H/dMMR); larotrectinib/entrectinib (NTRK). (Zenocutuzumab, Dabrafenib + trametinib, Pembrolizumab, Dostarlimab)
- Locoregional (intrahepatic, liver-confined): Y-90 radioembolisation, hepatic arterial infusion pump chemotherapy, or SBRT at specialised centres; no phase 3 proof of survival benefit. (Radioembolisation (TARE / SIRT, yttrium-90), SBRT / SABR (stereotactic radiotherapy))
- Second-line, no target: FOLFOX (ABC-06, modest benefit); liposomal irinotecan/5-FU had conflicting results (NIFTY positive, NALIRICC negative); clinical trials preferred. (NALIRICC (AIO), Cytotoxic chemotherapy)
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