NEWLY DIAGNOSED

Newly Diagnosed With Cholangiocarcinoma or Bile Duct Cancer

Newly diagnosed cholangiocarcinoma patients and families need clear next steps early. Cholangiocarcinoma is bile duct cancer, a rare cancer that starts in the bile ducts, the tubes that carry bile from the liver to the small bowel.

This page helps you follow the process,
avoid common early mistakes, ask better questions, and keep treatment options open.

Step 1. Follow The Process

Order Your Patient Navigator Journal
A response system companion guiding what you need to know, in the order it needs to be understood.

It builds earlier understanding, helps avoid common mistakes, and supports better questions so treatment options can stay open for longer.

The journal is interactive and supported by a mobile app with AI-supported updates, helping you stay informed as the cholangiocarcinoma landscape changes.

➤ Order Your Free Patient Navigator Journal

Step 2. Avoid Common Mistakes

Protect Your Options Early
In cholangiocarcinoma, important opportunities can be lost early when specialist review is delayed, surgery is not reassessed, tumour biology is not confirmed, molecular profiling is not discussed, or time drifts between decisions.

This guide helps newly diagnosed patients and caregivers recognise the early mistakes that can quietly narrow treatment options.

➤ Mistakes That Quietly Cost 

Step 3. Keep Options Open

Understand Early Before Choices Narrow

Keeping options open in cholangiocarcinoma means protecting future treatment choices before delays, missing information, or rushed decisions close them down.

It means gathering the right digital records early, asking the right questions, involving cholangiocarcinoma-experienced specialists, discussing genomic profiling, and considering clinical trials before decisions become urgent.

➤ Keep Options Open

Step 4. Improve Survival

Close the Gap Between Diagnosis and Understanding
Patients do not improve their response by knowing everything at once. They improve it by understanding what matters next.

This page explains how patients can close the gap after diagnosis, learn from others who found a way through, and act earlier to protect future options.

➤ Improve Survival

Step 5. Get High-Flow Specialist Review

Patient-Endorsed Medical Professionals

Cholangiocarcinoma is rare, complex, and time-sensitive.

Current high-flow cholangiocarcinoma-specific experience and expertise can define outcomes.

The Foundation’s patients have the opportunity to endorse medical professionals who have demonstrated this experience and expertise through the quality of care they received.

➤ Request Patient Endorsed Medical Registry

Step 6. Participate and Learn

Learn Faster Through Lived Experience
Cholangiocarcinoma patients and caregivers often learn critical lessons the hard way.

Patient stories and community participation help newly diagnosed families understand faster. They show what others faced, what they asked, where options appeared, and how caregivers helped keep decisions moving.

These lived-experience pathways do not guarantee outcomes. They help patients and caregivers recognise patterns, ask better questions, and protect options before they narrow.

➤ Read Patient Journeys

➤ Patient & Caregiver Community

➤ Caregiver & Supporters Community

Step 7. Speak With Experience

Connect With a Patient or Caregiver Mentor
Patients and caregivers who have navigated cholangiocarcinoma can help newly diagnosed families understand what the early stages feel like, what questions matter, and what to expect as decisions begin.

This is not medical advice. It is lived-experience guidance from people who have already walked part of the path.

➤ Connect with a Patient Mentor

Stay Updated

The cholangiocarcinoma landscape continues to evolve.

Clinical trials open.
New therapies emerge.
Research advances.

➤ Email Updates: Cholangio.Org 

➤ Facebook: Cholangiocarcinoma Australia

➤ LinkedIn: Cholangicarcinoma-Australia

Essential Guides for Newly Diagnosed Patients

  • Questions for Your First Appointment After Diagnosis

    The first questions to ask after a cholangiocarcinoma diagnosis, so patients and caregivers can understand what matters now, what comes next, and how to keep options open.

    Read Question Guide

  • Our Commitment to You

    We help newly diagnosed patients and families understand earlier, follow a clearer process, and keep options open when decisions matter.

    Our role is to help cholangiocarcinoma patients and their families close that gap between diagnosis and understanding.

    View our commitment 

Helpful Articles

  • Biliary 101

    Understand the bile duct system, bile flow, and why cholangiocarcinoma can affect jaundice, digestion, liver function, and treatment planning.

    Link: Biliary 101 →

Common Questions

What should I do first after a cholangiocarcinoma diagnosis?

Start by collecting your records, confirming the exact type and stage of cancer, and writing down your questions.

Ask your treating team whether surgery, genomic profiling, clinical trials, and specialist review have been considered.

Yes. Cholangiocarcinoma is the medical name for bile duct cancer.

It can start in bile ducts inside the liver, near the liver hilum, or outside the liver closer to the pancreas and small bowel.

Cholangiocarcinoma is rare and complex.

A second opinion from a team with strong experience in biliary tract cancers may help confirm diagnosis, review surgical possibilities, assess treatment options, and identify clinical trial pathways.

Genomic profiling should be discussed early, not only after treatment has stopped working.

It may identify biomarkers linked to targeted therapy, immunotherapy, or clinical trial options.

Yes. Clinical trial options can depend on tumour type, stage, prior treatments, biomarkers, location, fitness, and timing.

Asking early helps patients understand what may be possible before options narrow.

It means taking early steps that preserve future choices.

This may include collecting complete records, getting a specialist review, asking about surgery, requesting molecular testing, monitoring treatment response, and discussing trials before decisions become urgent.

Further Trusted Information

For general cancer information in Australia, you can also visit:

Cancer Council Australia
https://www.cancer.org.au/

Cancer Australia
https://www.canceraustralia.gov.au/

For international clinical guidance on biliary tract cancers, you can also visit:

ESMO — Biliary Tract Cancer Clinical Practice Guideline
https://www.esmo.org/guidelines/esmo-clinical-practice-guideline-biliary-tract-cancer

Australia: Most Endorsed by Patients

These clinicians are the most endorsed by the Foundation’s patient community.
For the full list, Click Here

Dr Charbel Sandroussi
Hepatopancreatobiliary and transplant surgeon
Clinical Associate Professor of Surgery, University of Sydney
Complex liver, pancreatic, bile duct, and upper gastrointestinal cancer surgery
https://drcharbelsandroussi.com

Dr Sandroussi’s public profile lists him as Clinical Associate Professor in Surgery at the University of Sydney, with clinical interests in complex upper gastrointestinal, hepatobiliary, and pancreatic cancer surgery.

Dr Koroush Haghighi
Hepatopancreatobiliary and transplant surgeon
Complex liver, pancreatic, and bile duct cancer surgery
https://www.koroushhaghighi.com.au

A/Prof Haghighi’s public profile describes extensive experience managing complex liver, pancreatic, and bile duct cancers.

Dr Chris Rogan
Interventional oncologist and radiologist
Image-guided liver tumour treatments and liver-directed therapies
https://drrogan.com

Dr Rogan’s public profile describes targeted liver tumour treatments including TACE, TARE/Y90, and bland embolisation for primary and metastatic cancers.

Author: Steve Holmes,
Founder & CEO, Cholangiocarcinoma Foundation Australia
https://cholangio.org/steve-holmes-ceo

Reviewed by:
Dr Natalie Rickers PhD GAICD
Caregiver and Scientist

Last updated: 5 June 2026

Learn To Row

We are in the same boat, you and I.
Some know how to row. Some do not. Yet.

Those who can row must teach.
Those who cannot must learn.

You do not need to be perfect.
You just need to row.

Keep rowing until you find our rhythm.

That rhythm will carry you.
It will strengthen you.
And it will strengthen those who row with you.

That is how we lead.
That is how you lead.
That is how we win. Together.

How We Win:
A Doctrine of a culture that is a survival system in itself