NEWLY DIAGNOSED
Newly Diagnosed Cholangiocarcinoma: First Steps
Newly diagnosed cholangiocarcinoma patients and families need clear next steps early. This guide explains what to do first after a cholangiocarcinoma or bile duct cancer diagnosis. 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.
STEP 2. Understand Your Diagnosis
Know Where The Cancer Started
Cholangiocarcinoma is bile duct cancer, but not all bile duct cancers start in the same place.
Ask your doctor where the primary tumour started, because location can affect surgery, stents, biopsy, symptoms, treatment planning, and which specialists should review your case.
Key question to ask:
What type of cholangiocarcinoma do I have, and where exactly did it start?
Cholangiocarcinoma is classified by where it starts in the bile duct system. International patient guidance from ESMO describes the main types as intrahepatic, perihilar/hilar, and distal cholangiocarcinoma.
Intrahepatic cholangiocarcinoma
This starts in the small bile ducts inside the liver.
Why it matters: this location can affect liver surgery planning, liver-directed treatments, systemic therapy, genomic profiling, and careful review of scans.
Depending on the case, surgical options may include liver resection, where part of the liver is removed.
Perihilar or hilar cholangiocarcinoma
This starts where the right and left bile ducts join and leave the liver. This area is sometimes called the liver hilum.
Why it matters: this location can affect bile drainage, jaundice, stenting, surgery planning, and whether a high-flow hepatobiliary surgeon should review the case early.
Depending on the case, surgical options may include resection, and in highly selected cases, liver transplant pathways may be discussed.
Distal extrahepatic cholangiocarcinoma
This starts lower down the bile duct, closer to the pancreas and small bowel.
Why it matters: this location can affect jaundice, bile drainage, biopsy approach, surgery planning, and whether the case should be reviewed alongside pancreatic-head surgery pathways.
Depending on the case, surgical options may include Whipple surgery, also called a pancreaticoduodenectomy.
Ask your doctor to show you the tumour location on your scan or on a diagram.
Questions to ask:
- What type of cholangiocarcinoma do I have: intrahepatic, perihilar/hilar, or distal extrahepatic?
- Where exactly is the primary tumour?
- Has the location been confirmed by imaging, pathology, or both?
- Does the tumour location affect whether surgery is possible?
- Does the tumour location affect whether I need a stent, drain, biopsy, ERCP, EUS, or interventional radiology review?
- Which specialist should review my case because of this tumour location?
STEP 3. Understand Stage & Spread
Know Whether It Has Spread, And Where
After tumour location, the next question is whether the cancer is still localised or has spread.
This matters because stage and spread can affect surgery, treatment options, clinical trials, urgency, and whether more specialist review is needed.
Key question to ask:
Has my cholangiocarcinoma spread, and if so, where?
The stage describes how far the cancer has grown or spread in the body. NCI explains that staging helps doctors plan the best treatment, and bile duct cancer is commonly described using the TNM system: tumour, nodes, and metastasis.
For a newly diagnosed patient, the most important point is not to memorise every staging term. The first task is to understand whether the cancer is:
Localised
The cancer appears limited to the bile duct area or nearby tissue.
Locally advanced
The cancer has grown into nearby structures or blood vessels, or is difficult to remove safely with surgery at this time.
Metastatic
The cancer has spread to distant parts of the body, such as distant lymph nodes, peritoneum, lungs, bones, or other organs.
International patient guidance from ESMO explains that biliary tract cancer staging looks at tumour size, whether it has spread to lymph nodes, and whether it has spread into the liver, lungs, or other parts of the body.
Questions to ask
- What stage is my cholangiocarcinoma?
- Is it localised, locally advanced, or metastatic?
- Has it spread to lymph nodes?
- Has it spread within the liver?
- Has it spread to the peritoneum, lungs, bones, or anywhere else?
- Does the stage affect whether surgery is possible?
- Does the stage affect whether I should seek another surgical or specialist opinion?
- Does the stage affect whether genomic profiling or clinical trials should be discussed now?
- Can you show me the areas of disease on my scan?
Why this matters
Stage and spread can change the first treatment conversation. The American Cancer Society explains that the extent of bile duct cancer is an important factor in deciding treatment options, and that doctors often divide bile duct cancers into groups based on whether surgery may be possible.
STEP 4. Explore Surgery Fully
Do Not Let Surgery Be Dismissed Too Early
Surgery is one of the most important questions in cholangiocarcinoma.
Even when surgery is not possible right now, patients and caregivers should understand why, whether the case has been or will be reviewed by a high-flow hepatobiliary surgeon who specialises in cholangiocarcinoma.
Key question to ask:
If surgery is not possible at this time, what would need to change for surgery to become an option?
Surgery Review and Second Opinions
Surgery is often the main treatment that can aim to remove cholangiocarcinoma completely when the cancer is considered resectable. Resectable means the cancer appears able to be removed safely with surgery.
The National Cancer Institute explains that if bile duct cancer has not spread and is in a place where surgery can be safely done, the tumour and some surrounding tissue may be removed. NCI also separates bile duct cancer treatment into resectable and unresectable pathways.
The American Cancer Society explains that surgery for bile duct cancer is generally discussed as either potentially curative surgery for resectable cancer, or palliative surgery for unresectable cancer.
Ask For A Face-To-Face Surgical Appointment
Ask to be referred to meet directly with a high-flow hepatobiliary surgeon who currently operates on cholangiocarcinoma patients, ideally weekly.
The purpose of this appointment is for the surgeon to personally review your scans, reports, tumour location, spread, fitness, and possible surgical pathway with you.
The Foundation provides a Patient-Endorsed Medical Professionals list by email.
➤ Request the Patient-Endorsed Medical Professionals list claire@cholangio.org
If the referral becomes difficult, ask your GP to refer you directly to your chosen or recommended hepatobiliary surgeon.
An MDT review is important. But in cholangiocarcinoma, when surgery is being ruled in or out, patients should not rely only on a decision passed back through another doctor. The patient should meet directly with the surgeon who would assess whether surgery is possible.
Questions To Ask
- What makes my cancer resectable or unresectable?
- If surgery is not possible now, why exactly?
- Is it because of tumour location?
- Is it because of blood vessel involvement?
- Is it because of spread to lymph nodes or other organs?
- Is it because of my liver function, infection, jaundice, or general fitness?
- Could treatment, drainage, response, or time make surgery possible later?
Should I seek a second surgical opinion?
Use This Exact Question
I understand surgery is not possible at this time. What would need to change for surgery to become an option? What would need to be done, and what can I do to help this happen?
This question matters because “not operable now” is not always the same as “never operable”. In some cases, treatment response, better drainage, improved fitness, or further specialist review may change the conversation.
This is not about forcing surgery.
It is about making sure surgery has been properly explored before the pathway moves on.
STEP 5. Confirm Biopsy, Pathology and Biomarkers
Get The Report And Ask What Was Tested
Ask whether a biopsy has been taken, or whether tissue can be safely obtained.
Then ask for a digital copy of your histopathology report and ask your doctor to walk you through it in plain language.
Do not only ask, “What does the report say?” Ask whether the right markers were tested, because some markers can help confirm bile duct origin, while others may affect treatment opportunities.
Key question to ask:
Has my pathology report tested the markers that may confirm cholangiocarcinoma and identify treatment opportunities?
A pathology report is not just paperwork. It is the evidence layer behind the diagnosis.
For cholangiocarcinoma patients, the report may include two different types of information:
Diagnostic markers help the pathologist understand what type of cancer cells are present and whether the cancer fits with bile duct origin.
Treatment-opportunity markers may affect immunotherapy, targeted therapy, HER2-directed therapy, clinical trial options, or whether more genomic profiling is needed.
These markers help the pathologist understand whether the cancer pattern fits bile duct origin.
Think of them like cell ID tags. They do not tell the whole story by themselves, but together they help show where the cancer may have come from.
This contains CK7, CK19, CK20, CDX2, SATB2, TTF-1, PAX8 and GATA3.
These markers help the pathologist understand what type of cancer cells are present and whether the pattern fits with bile duct origin.
Think of these markers like cell ID tags. They do not tell the whole story by themselves, but together they help show where the cancer may have come from.
CK7
CK7 is a cytokeratin, which is a structural support protein found in epithelial cells — the lining cells that form tubes, ducts, glands, and organ surfaces. Think of it like internal scaffolding that helps these cells keep their shape.
Why it matters: CK7 is often positive in cholangiocarcinoma and bile duct-type cells. AASLD notes that CK7 is positive in most cholangiocarcinomas.
CK19
CK19 is another cytokeratin support protein found in many duct-type epithelial cells, including bile duct cells.
Why it matters: CK19 is commonly positive in cholangiocarcinoma and can support a bile duct-type pattern. AASLD notes that CK19 is positive in about 80–90% of cholangiocarcinomas.
CK20
CK20 is another cytokeratin marker. It is more commonly linked with some intestinal-type epithelial cells, but it can vary depending on the cancer and where it started.
Why it matters: CK20 can help compare cholangiocarcinoma with other possible cancer origins, especially bowel or other gastrointestinal cancers. It is not used alone.
CDX2
CDX2 is a marker linked with intestinal cell programming. It can appear when cells have features that look more like intestinal-type cells.
Why it matters: CDX2 can help doctors consider whether a cancer may have come from the bowel or another gastrointestinal site, or whether the tumour has mixed features.
SATB2
SATB2 is often used as a bowel-origin marker, especially when doctors are trying to distinguish bile duct cancer from colorectal cancer spread.
Why it matters: if SATB2 is negative, that may help argue against colorectal origin, depending on the full marker pattern.
TTF-1
TTF-1 is often used when doctors need to check whether a cancer could have come from the lung or thyroid.
Why it matters: a negative TTF-1 can help rule against lung origin in the right context.
PAX8
PAX8 is often used when doctors need to check whether a cancer could have come from the kidney, thyroid, or gynaecological organs.
Why it matters: a negative PAX8 can help rule against those possible origins in the right context.
GATA3
GATA3 is often used when doctors need to check whether a cancer could have come from breast or urothelial tissue.
Why it matters: it helps compare bile duct origin against other possible cancer origins.
No single marker proves everything by itself. Pathologists look at the full pattern: which markers are positive, which are negative, what the cells look like under the microscope, where the tumour is on scans, and the patient’s clinical picture.
Use this exact question:
Can you show me which markers support bile duct origin, and which markers were used to rule out other possible primary cancers?
These markers should be requested early because they may affect immunotherapy, HER2-directed treatment, clinical trial matching, or whether further testing is needed.
Think of them as option-finding signals. They do not guarantee a treatment, but they may open a door that would otherwise be missed.
Before treatment decisions move too far, request that your doctor orders or confirms these results.
MMR Status
Request testing for the four mismatch repair proteins:
- MLH1
- PMS2
- MSH2
- MSH6
MMR means mismatch repair. It is one of the cell’s DNA spell-check systems. Its job is to help fix copying mistakes when cells divide.
If the system is working, the report may say pMMR, meaning mismatch repair is proficient (working).
If the system is not working properly, the report may say dMMR, meaning mismatch repair is deficient.
Why it matters: dMMR can make a tumour more visible to the immune system. It should trigger an early immunotherapy discussion, not be discovered late.
Request: Please test and report MMR status, including MLH1, PMS2, MSH2 and MSH6, and confirm whether the result is pMMR or dMMR.
MSI Status
Request testing and reporting of MSI status:
- MSI-high
- MSI-low
- Microsatellite stable
MSI stands for microsatellite instability. It is another way of checking whether the tumour’s DNA repair system is unstable.
Think of it as checking whether the cell’s copying errors are piling up.
Why it matters: MSI-high can make a tumour more recognisable to the immune system and may support immunotherapy eligibility in some settings. NCI explains that tumours with MSI-H or dMMR features can be promising targets for immunotherapy because they tend to have more mutations and may be more likely to be recognised by the immune system.
Request: Please test and report MSI status, and confirm whether my tumour is MSI-high, MSI-low, or microsatellite stable.
PD-L1
Request PD-L1 testing and scoring.
PD-L1 is a protein that can sit on the surface of some cancer cells. It signals the immune system.
Think of it like a brake signal. When PD-L1 connects with the approaching immune cells, it tells the immune system to slow down or stop, instead of attacking.
Some immunotherapy drugs are designed to block this brake signal, so the immune system can recognise and attack cancer cells. NCI explains that immune checkpoint inhibitors work by blocking checkpoint proteins that stop immune cells from attacking cancer cells.
Why it matters: PD-L1 may help inform an immunotherapy discussion, but it is not the only factor.
Request: Please test and report PD-L1, including the TPS or CPS score if used by the laboratory.
HER2 Status
Request HER2 testing and scoring.
HER2 is a growth-signal receiver on the surface of some cancer cells.
Think of it like a stuck growth switch. If the HER2 gene is damaged, it becomes overactive helping the cancer grow.
HER2 is commonly reported as:
- 0
- 1+
- 2+
- 3+
Why it matters: HER2 overexpression or amplification may open HER2-directed treatment or clinical trial pathways in selected biliary tract cancer patients.
Request: Please test and report HER2 status, including the IHC score: 0, 1+, 2+, or 3+. If the result is 2+, please confirm whether further testing is needed.
Tumour Differentiation
Request that tumour differentiation is reported and explained.
Differentiation describes how much the cancer cells still look like the normal cells they came from.
Think of it like a cell losing its original shape and discipline.
- Well differentiated means the cells still look more like the original cells.
- Moderately differentiated means they are more changed.
- Poorly differentiated means they look more abnormal and less organised.
Why it matters: Differentiation can help doctors understand how aggressive the cancer appears, but it must be interpreted with the stage, tumour location, scans, biomarkers, and treatment response.
Poorly differentiated cancers are generally regarded as more aggressive because the cells look more abnormal and may grow and spread faster. But this must still be interpreted with the stage, tumour location, scans, biomarkers, and treatment response. NCI explains that the more abnormal cancer cells look, the more aggressive the cancer may be and the faster it is likely to grow and spread.
Request: Please confirm whether my tumour is well differentiated, moderately differentiated, or poorly differentiated, and explain what that means in my case.
Use this exact request:
Please confirm that my pathology report includes MMR, MSI, PD-L1, HER2 and tumour differentiation. If any of these have not been tested or reported, please request them now and confirm whether there is enough tissue available.
Missing markers can mean retesting, more waiting, extra cost, more stress, and lost time while treatment decisions are already moving.
Why This Must Be Asked Early
Many patients assume every useful test is automatically done. That is not always the case.
Some pathology reports confirm cancer but do not include all markers that may matter for cholangiocarcinoma treatment planning.
If these tests are not requested early, patients may face:
- more waiting
- repeat testing
- extra cost
- extra stress
- delays to genomic profiling
- delays to trial matching
- lost time while treatment decisions are already moving
As the patient, you should ask the doctor to request the relevant tests on your behalf as early as possible.
Questions To Ask
- Do I have a digital copy of my histopathology report?
- Can my doctor walk me through the report in plain language?
- Does the report confirm cholangiocarcinoma?
- Were markers used to rule out other possible cancer origins?
- Was MMR tested?
- Is my result pMMR or dMMR?
- Was MSI tested?
- Is my tumour MSI-high?
- Was PD-L1 tested? What is the TPS or CPS score?
- Was HER2 tested? What is the HER2 IHC score: 0, 1+, 2+, or 3+?
- What is the tumour differentiation: well, moderate, or poor?
- Is there enough tissue for genomic profiling?
- If there is not enough tissue, what is the plan to obtain more?
Use this exact question:
Can you show me which markers were tested in my pathology report, and whether anything still needs to be requested for cholangiocarcinoma treatment planning?
If these markers have not been tested, can you request them now and confirm whether there is enough tissue for genomic profiling?
This equips you immediately. It shows what to look for, what to request, and why missing markers can cost time.
STEP 6. Discuss Genomic Profiling, Trials and Treatment
Look For Treatment Pathways Early
Cholangiocarcinoma is not one single disease pathway. Different tumours can be driven by different mutations, markers, and treatment opportunities.
Genomic profiling looks for changes inside the tumour that may affect targeted therapy, immunotherapy, clinical trial options, or treatment sequencing.
Key action:
Request comprehensive genomic profiling early, before treatment decisions move too far.
Genomic Profiling
Genomic profiling is a deeper test that looks inside the tumour’s genetic instructions.
Think of the pathology report as telling you what type of cancer it looks like. Genomic profiling looks for what may be driving it.
Genomic profiling matters in cholangiocarcinoma because some tumours have markers or mutations that may open targeted therapy, immunotherapy, or clinical trial pathways.
The NCI bile duct cancer treatment summary includes treatment information for resectable and unresectable bile duct cancer, including systemic therapy, immunotherapy, and targeted therapy approaches for selected molecular markers.
Request: Please order comprehensive genomic profiling of my tumour and confirm whether the test includes dMMR/MSI-high, FGFR2, IDH1, BRAF, HER2, NTRK, and other actionable alterations.
Main Targetable Markers To Look For First
These are not the only important markers, but they are among the first cholangiocarcinoma patients should recognise and confirm.
dMMR / MSI-high
This means the tumour may have a problem repairing DNA copying mistakes.
Think of it like the cell’s spell-check system failing. When enough mistakes build up, the tumour can become more visible to the immune system.
Why it matters: dMMR or MSI-high can be relevant to immunotherapy discussions. NCI explains that pembrolizumab, also known as Keytruda, became the first FDA-approved cancer treatment based on a tumour’s genetic feature rather than where the cancer started in the body.
FGFR2 Fusion or Rearrangement
FGFR2 is a growth-signal pathway. A fusion or rearrangement is like wiring joined the wrong way, keeping growth signals switched on.
Why it matters: FGFR2 fusions or rearrangements can be relevant to targeted therapy and clinical trial options, especially in intrahepatic cholangiocarcinoma.
Why it matters: FGFR2 fusions or rearrangements can be relevant to targeted therapy and clinical trial options, especially in intrahepatic cholangiocarcinoma.
IDH1 Mutation
IDH1 helps cells process fuel and manage their internal chemistry.
When IDH1 is mutated, the cell can make an abnormal chemical called 2-HG.
Think of IDH1 like an engine setting inside the cell. When the setting is faulty, the engine produces abnormal exhaust fumes. Those fumes are 2-HG.
Why it matters: 2-HG does not simply choke the cell. It can fog the cell’s control room. It interferes with the systems that help the cell read instructions, mature properly, and stay organised. This can help cancer cells remain abnormal and keep growing.
Simple version:
Faulty IDH1 engine → 2-HG exhaust fumes → control room fogged → cell stays abnormal.
IDH1-mutant cholangiocarcinoma now has targeted therapy relevance in Australia. Tibsovo® / ivosidenib is TGA-approved for adults with locally advanced or metastatic cholangiocarcinoma with an IDH1 R132 mutation after at least one prior line of systemic therapy.
Think of ivosidenib like a wrench designed to fit the faulty IDH1 engine setting. By blocking the faulty IDH1 enzyme, it helps reduce the abnormal 2-HG exhaust fumes that can disrupt the cell’s control systems.
Request: Please confirm whether my tumour has an IDH1 R132 mutation, and whether this creates a targeted therapy or clinical trial option.
Other Markers That May Matter
Comprehensive genomic profiling should also check for other changes that may affect treatment options or clinical trial matching.
These may include:
BRAF V600E
A growth-signal mutation that may keep cancer growth pathways switched on.
HER2 amplification or overexpression
A growth-receptor change that may make HER2-directed treatment or trials relevant.
NTRK fusion
A rare gene fusion that can drive cancer growth and may have tumour-agnostic targeted therapy relevance.
RET, MET, BRCA/HRD, TMB and other relevant alterations
These may matter depending on the test panel used, the tumour type, and available treatment or trial pathways.
Patient Request
Please order comprehensive genomic profiling and confirm whether my tumour has dMMR/MSI-high, FGFR2 fusion or rearrangement, IDH1 mutation, BRAF V600E, HER2, NTRK, RET, MET, BRCA/HRD, TMB, or any other actionable alteration.
Australian Genomic Profiling Pathway
In Australia, patients may be able to access comprehensive genomic profiling through Omico, depending on eligibility and referral pathway.
Omico is a national precision oncology program. Through its molecular screening process, a doctor completes a referral form, the patient signs consent, cancer tissue is assessed, and results may be matched to an existing therapy or clinical trial.
Request: Please check whether I am eligible for referral to Omico or another comprehensive genomic profiling pathway now.
Use This Exact Request
Please order or refer me for comprehensive genomic profiling now, confirm whether there is enough tissue available, and check whether my tumour has any actionable markers that may affect targeted therapy, immunotherapy, or clinical trial options.
STEP 7. Use The 7-Day Lived-Experience Navigation Line
When Cholangiocarcinoma Does Not Wait, Call Us
Some questions cannot wait for office hours.
Newly diagnosed cholangiocarcinoma patients and caregivers often need help understanding what to do next, what to ask, what records to collect, or which pathway may be closing too quickly.
The Foundation provides a 7-Day Lived-Experience Navigation Line to help patients and caregivers get practical guidance when timing matters.
We do not restrict support to office hours. If we miss your call, we call you back.
Key action:
Call early if you are unsure, delayed, blocked, or overwhelmed.
The 7-Day Lived-Experience Navigation Line is for patients and caregivers who need practical help understanding the next step.
This is not emergency medical care. This is not a replacement for your treating team. This is lived-experience navigation from people who understand cholangiocarcinoma, the common early gaps, and the questions that need to be asked before options narrow.
Call when you need help with:
- Understanding what to do next
- Preparing for your next appointment
- Knowing which records to collect
- Understanding whether surgery has been fully explored
- Asking about a face-to-face hepatobiliary surgical appointment
- Requesting pathology, biomarkers, genomic profiling, or Omico referral
- Understanding why a second opinion may matter
- Finding the right Foundation support pathway
- Connecting with the Patient Navigator Journal, mentor support, or patient community
Cancer Council Australia also recognises peer support as valuable, describing Cancer Connect as a service that links people with trained volunteers who have had a similar cancer experience. The Foundation’s navigation line applies this principle specifically to cholangiocarcinoma, where timing and disease-specific knowledge matter.
What This Line Helps With
It helps you move from confusion to the next practical action.
It helps caregivers understand what to do when the patient is tired, scared, jaundiced, in hospital, or too overwhelmed to manage the details.
It helps identify which Foundation pathway may help next:
Patient Navigator Journal
For structured learning and step-by-step guidance.
Patient Mentor Connection
For lived-experience support from someone who has already walked part of the path.
Patient & Caregiver Community
For shared experience, questions, and ongoing learning.
Patient-Endorsed Medical Professionals List
For patients needing high-flow cholangiocarcinoma review pathways.
Call the Foundation if you are unsure what to do next, if a decision feels rushed, if surgery has been ruled out without direct specialist review, or if genomic profiling has not been discussed.
Contact Details
7-Day Lived-Experience Navigation Line
Steve: +61 415 153 522
Claire: +61 431 180 783
If we miss your call, we call you back.
Stay Updated
The cholangiocarcinoma landscape continues to change.
- Clinical trials open.
- New therapies emerge.
- Research advances.
- Access pathways can change.
Stay connected so you do not rely only on what was available or discussed at the time of diagnosis.
➤ Cholangio Today: Email Updates
➤ Facebook Page: Cholangiocarcinoma Australia
➤ Facebook Group: Cholangiocarcinoma Australasian Community
➤ LinkedIn: Cholangiocarcinoma Foundation 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.
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.
Avoid Common Mistakes
Important opportunities can be lost early when specialist review is delayed, surgery is not reassessed, tumour biology is not confirmed, genomic 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.
Keep Options Open
Keeping options open in cholangiocarcinoma means protecting future treatment choices before delays, missing information, or rushed decisions close them down.
This guide explains the early steps that help preserve future choices, including records, specialist review, genomic profiling, and clinical trials.
Improve Survival
Improving survival starts with improving the response.
This guide explains how patients can close the gap between diagnosis and understanding, learn from what has worked for others, and act earlier to protect future options.
Helpful Articles
Biliary 101
Understand the bile duct system, bile flow, and why cholangiocarcinoma can affect jaundice, digestion, liver function, and treatment planning.
Common Questions
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
