The first 60 days: Biliary tract cancer (all types)
Biliary tract cancers arise in the bile ducts inside or outside the liver, the gallbladder or the ampulla where the duct meets the bowel. They share a poor outlook and the same first-line chemotherapy with immunotherapy, but differ in causes and in the targetable mutations they carry. Each has its own page. Below, week by week, is what OnCo's record of Biliary tract cancer (all types) 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: Resectable disease.
- Medical oncologistNamed in the standard of care for: Resectable disease, Advanced disease, Second line by biology.
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.
Surgery followed by six months of capecitabine (BILCAP).
Gemcitabine-cisplatin with durvalumab (TOPAZ-1) or pembrolizumab; targeted therapy for FGFR2 and IDH1 alterations on progression.
Pemigatinib or futibatinib for FGFR2 fusions, ivosidenib for IDH1 mutations, FOLFOX otherwise.
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 FGFR2 fusions and IDH1 mutations, HER2 amplification, Microsatellite instability, CA 19-9), 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 Cholangiocarcinoma, Gallbladder cancer, Ampullary cancer.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Resectable disease
- For my situation (resectable disease), which of the standard options do you recommend and why?Guideline options include: Surgery followed by six months of capecitabine (BILCAP).
- Am I a candidate for Capecitabine, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of BILCAP apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Advanced disease
- For my situation (advanced disease), which of the standard options do you recommend and why?Guideline options include: Gemcitabine-cisplatin with durvalumab (TOPAZ-1) or pembrolizumab; targeted therapy for FGFR2 and IDH1 alterations on progression.
- Am I a candidate for Gemcitabine, Cisplatin, Durvalumab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Second line by biology
- For my situation (second line by biology), which of the standard options do you recommend and why?Guideline options include: Pemigatinib or futibatinib for FGFR2 fusions, ivosidenib for IDH1 mutations, FOLFOX otherwise.
- Am I a candidate for Pemigatinib, Futibatinib, Ivosidenib or related drugs, 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 Pemigatinib, Futibatinib, Ivosidenib?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 “Most patients are diagnosed too late for surgery”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “No screening even in high-incidence regions”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Biliary tract cancer (all types): the full pageBiliary tract cancers arise in the bile ducts inside or outside the liver, the gallbladder or the ampulla where the duct meets the bowel. They share a poor outlook and the same first-line chemotherapy with immunotherapy, but differ in causes and in the targetable mutations they carry. Each has its own page.
- 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.