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Living with cancer· Appointment prep

Appointment sheet: Extrahepatic cholangiocarcinoma (perihilar and distal)

One page to bring and write on: your details, the questions for Extrahepatic cholangiocarcinoma (perihilar and distal) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Extrahepatic cholangiocarcinoma (perihilar and distal)

Prepared with OnCo (onco.cc/prep/extrahepatic-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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

25 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Bismuth-Corlette type and vascular involvement on MRI and CT, CA 19-9 after biliary decompression, HER2 amplification and overexpression, KRAS and TP53, Microsatellite instability and BRAF V600E), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis and jaundice
  1. 5.For my situation (diagnosis and jaundice), which of the standard options do you recommend and why?
Resectable perihilar
  1. 6.For my situation (resectable perihilar), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Capecitabine, and what side effects should I expect?
  3. 8.How do the results of BILCAP apply to someone like me?
Resectable distal
  1. 9.For my situation (resectable distal), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Capecitabine, and what side effects should I expect?
  3. 11.How do the results of BILCAP apply to someone like me?
Unresectable perihilar, selected
  1. 12.For my situation (unresectable perihilar, selected), which of the standard options do you recommend and why?
Advanced, first line
  1. 13.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Gemcitabine + cisplatin, Durvalumab, Pembrolizumab, and what side effects should I expect?
  3. 15.How do the results of TOPAZ-1 and KEYNOTE-966 apply to someone like me?
Advanced, HER2-positive after chemotherapy
  1. 16.For my situation (advanced, her2-positive after chemotherapy), which of the standard options do you recommend and why?
  2. 17.Am I a candidate for Zanidatamab, Trastuzumab deruxtecan, and what side effects should I expect?
  3. 18.How do the results of HERIZON-BTC-302 apply to someone like me?
Second line without a target
  1. 19.For my situation (second line without a target), which of the standard options do you recommend and why?
  2. 20.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), Pembrolizumab, Dabrafenib + trametinib, and what side effects should I expect?
Any stage
  1. 21.Are there clinical trials I could join, for example of Zanidatamab, HERIZON-BTC-302, Trastuzumab deruxtecan, Biliary stenting and drainage?
  2. 22.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 23.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 24.I read that “Most perihilar tumours are unresectable at presentation, and half of resections leave microscopic disease”. How does that affect my plan?
  5. 25.I read that “Biliary obstruction and cholangitis, not the cancer's growth, often end treatment”. How does that affect my plan?

The words I may hear

Tests and results to bring

Diagnosis and jaundice: MRI with cholangiography and CT for staging, endoscopic brushing or biopsy, and biliary drainage by stent or percutaneous route with antibiotics for cholangitis.

Biomarker results to ask for: Bismuth-Corlette type and vascular involvement on MRI and CT (resectability), CA 19-9 after biliary decompression, HER2 amplification and overexpression (about one in six), KRAS and TP53 (prognostic), Microsatellite instability and BRAF V600E (rare, actionable), Bilirubin and future liver remnant volume before surgery.

Scans and tests linked to this cancer: CT (computed tomography), MRI.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

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 browser
What I was told
Agreed next steps, dates and who to call