Start Here
A diagnosis creates chaos and overwhelm.
Understanding brings clarity. A clear plan shows you what to do next.
You do not need to understand everything today. You need to understand your next step, and the one after that.
Follow the process
The process gives you a clear sequence of steps, built from lived experience and clinical guidance, to help you avoid common mistakes.
Understand what matters
Follow it to understand what matters, why it matters and when it matters. That understanding reveals your next step.
Keep your options open
Each step turns understanding into an Earlier Right Action, helping keep all your options open.
Start The Process
Start with the Patient Navigator Journal
The Patient Navigator Journal is the process. It helps you understand each step and turn that understanding into your next Earlier Right Action.
Step 2 | Understand Your Diagnosis
Locate your cancer.
Cholangiocarcinoma is bile duct cancer. But where it starts in the bile duct system can change the specialists you need, the tests you may need and the treatment options that should be considered.
Before you try to understand every medical term, begin by locating where the cancer started. This gives the rest of your diagnosis its context.
Inside the liver
Intrahepatic cholangiocarcinoma begins in the small bile ducts within the liver.
At the liver hilum
Perihilar or hilar cholangiocarcinoma begins where the main bile ducts join near the liver.
Near the pancreas
Distal cholangiocarcinoma begins lower down the bile duct, near the pancreas and small bowel.
Your Next Earlier Right Action
Ask to see the location.
Ask your doctor to show you where the cancer started on your scan, and explain how that location affects your treatment options.
More detail: tumour location and why it matters
Intrahepatic cholangiocarcinoma
This starts in the smaller bile ducts inside the liver. It may affect liver surgery planning, liver-directed treatments, genomic profiling and the careful review of scans.
Depending on the individual case, surgery may involve removing part of the liver, known as a liver resection or hepatectomy.
Perihilar or hilar cholangiocarcinoma
This starts near the liver hilum, where the right and left hepatic ducts join. It may affect bile drainage, jaundice, stenting and complex surgical planning.
Early review by a hepatobiliary surgeon experienced in cholangiocarcinoma is especially important when this area is involved.
Distal cholangiocarcinoma
This starts lower down the bile duct, closer to the pancreas and small bowel. It may affect bile drainage, biopsy approach, surgical planning and which specialists should review the case.
Depending on the individual case, surgery may involve a Whipple procedure, also called a pancreaticoduodenectomy.
Why you need to see the scan
Terms such as “inside the liver”, “at the hilum” and “near the pancreas” can be difficult to picture. Seeing the location on your own scan turns the diagnosis into something you can understand and discuss.
Questions to ask
- What type of cholangiocarcinoma do I have: intrahepatic, perihilar or distal?
- Where exactly did the primary tumour start, and how was this confirmed?
- How does its location affect surgery, drainage, biopsy or treatment planning?
- Which specialist should review my case early because of this tumour location?
Use this exact question:
Can you show me where the cancer started on my scan,
explain what type of cholangiocarcinoma I have,
and tell me how its location affects my treatment options?
Step 3 | Understand Stage & Spread
Understand where it has spread.
Your tumour location tells you where the cancer began. Stage and spread tell you how far it has travelled.
You do not need to memorise every staging term. You need to understand where the cancer is now, whether it has spread, and what that changes next.
Localised
The cancer appears limited to the bile duct area or nearby tissue.
Locally advanced
The cancer involves nearby structures, blood vessels or lymph nodes, making treatment planning more complex.
Metastatic
The cancer has spread to a distant part of the body, such as another organ or distant lymph nodes.
Your Next Earlier Right Action
Ask to see where the cancer is.
Take your Patient Navigator Journal to the appointment. Ask your doctor to show you the cancer on your scan, then mark its location on the body diagram in your Journal. Ask whether it is localised, locally advanced or metastatic, and how that changes the next treatment decision.
More detail: stage, spread and what it means
Stage is a description, not a verdict
Stage describes how far the cancer has grown or spread. It helps the treating team plan treatment, assess whether surgery may be possible and identify other options that should be considered.
For a newly diagnosed patient, the most useful first picture is whether the cancer is localised, locally advanced or metastatic.
Localised
The cancer appears limited to the bile duct area or nearby tissue. This may mean surgery or another local treatment needs to be assessed, depending on tumour location, blood vessels, liver function and whether the cancer can be removed safely.
Locally advanced
The cancer has grown into nearby structures, lymph nodes or blood vessels, or cannot be removed safely at this time.
This does not automatically answer every future question. Treatment response, drainage, fitness or further specialist review may change what can be considered later.
Metastatic
The cancer has spread to a distant part of the body. This may include distant lymph nodes, the peritoneum, lungs, bones or another organ.
Treatment planning may include systemic treatment, genomic profiling, clinical trials, symptom management and protecting future options.
Questions to ask
- Is my cancer localised, locally advanced or metastatic?
- Can you show me exactly where it is on my scan?
- Has it spread to lymph nodes, elsewhere in the liver, the peritoneum, lungs, bones or another organ?
- How does this affect whether surgery may be possible now, or whether it should be assessed again later?
- What does this mean for my next treatment decision and the options that need to be protected now?
Use this exact question:
Can you show me where the cancer is on my scan,
explain whether it is localised, locally advanced or metastatic,
and tell me how that affects surgery, treatment
and the options that should be considered now?
Step 4 | Start With Cure
Is there a curative opportunity?
Surgery is the main established curative-intent pathway for cholangiocarcinoma. The first treatment decision is whether all known cancer can be completely removed.
Think of surgery as a series of doors, not one door. If one door is closed, the next question is whether another curative pathway can still open. The answer can depend on the surgeon, the centre and the capability available.
Ask the first question
Can all known cancer be completely removed with curative intent?
Get direct surgical assessment
Ask for an experienced cholangiocarcinoma surgeon to personally review your imaging and anatomy.
Keep the doors open
If surgery is not possible today, can a biopsy be obtained for molecular profiling?
Your Next Earlier Right Action
Ask for a specialist surgical assessment.
Has an experienced cholangiocarcinoma surgeon personally reviewed my imaging and assessed whether all known cancer can be completely removed with curative intent?
What does “curative intent” mean?
Think of curative intent as the highest-value treatment goal. The plan is trying to remove or eliminate all known cancer, rather than only control it for a period of time.
In cholangiocarcinoma, surgery is the main established curative-intent pathway. A transplant pathway may also be relevant in carefully selected situations.
The key question is not simply whether someone has said “operable” or “inoperable”. It is whether all known cancer can be removed safely, what is preventing removal if it cannot, and whether that barrier can change.
Ask: Is the current treatment plan pursuing a curative opportunity that exists now, or trying to create one for later?
Why does the surgeon and centre matter?
Think of resectability as a technical judgement as well as a cancer judgement. Tumour location, bile ducts, blood vessels, liver reserve and the amount of healthy tissue that must remain all affect whether complete removal is possible.
An oncology opinion, radiology report or multidisciplinary discussion is not the same as direct assessment by the surgeon whose expertise is needed to determine whether the operation is technically possible.
A more complex operation may require major liver resection, bile duct reconstruction, a Whipple procedure, blood-vessel reconstruction or another specialised technique. The issue may be capability, rather than the cancer being impossible to remove.
Ask: Which surgeon personally reviewed my imaging, what experience do they have with this type of cholangiocarcinoma operation, and should another specialist surgical opinion be obtained?
What can change resectability?
Resectability describes the cancer at a particular point in time. If treatment reduces tumour burden, controls disease elsewhere or changes the tumour’s relationship to important structures, the surgical question may change.
Sometimes the barrier is not the tumour itself. It may be whether enough functioning liver would remain after surgery. The liver left behind is called the future liver remnant. In selected patients, liver-preparation procedures may increase it before major surgery.
A previous decision that surgery was not possible should not remain fixed if the disease meaningfully changes.
Ask: What specifically is preventing surgery now, which of those barriers could change, and when will resectability be assessed again?
Could a transplant pathway apply?
Liver transplantation is a separate curative-intent pathway with highly specific entry criteria. It is not assumed to be part of standard surgery assessment.
In selected cholangiocarcinoma situations, a specialist transplant program may consider transplantation within a defined treatment protocol. Eligibility depends on disease location, extent, prior treatment, protocol requirements and the transplant centre.
Ask: Does my disease fit a recognised transplant pathway, and should a specialist transplant centre assess it?
How do I prepare for surgical review or a second opinion?
A surgical review is strongest when the surgeon can see the full picture without delay.
- Current scan images, not only written scan reports.
- CT, MRI, PET and ultrasound reports where relevant.
- Pathology, biopsy and operative reports.
- Recent blood tests, including liver function results.
- Your treatment plan and treatments already received.
Take your Patient Navigator Journal. Ask the surgeon to show you the cancer on the scan, explain the curative question in plain language and record what needs to happen next.
Ask: Can my scan images and reports be sent now for direct review by the surgeon I am seeing?
Step 5 | Confirm Biopsy, Pathology and Biomarkers
Confirm the evidence behind your diagnosis.
Your pathology report is the evidence behind the diagnosis. It confirms what the cells show, helps identify where the cancer began and can reveal information that may affect your treatment options.
Think of it as the laboratory record of what has been found so far. It is not just paperwork. It tells your team what is known, what is still missing and whether enough tissue has been preserved for the testing that may guide what happens next.
Confirm the diagnosis
Ask whether the pathology supports cholangiocarcinoma.
Check the markers
Ask which diagnostic and treatment-relevant markers have been tested.
Protect the tissue
Confirm enough tissue remains for further testing if needed.
Keep your report
Request and store copies of every pathology report.
Your Next Earlier Right Action
Ask what has been confirmed, tested and preserved.
Does my pathology support cholangiocarcinoma, which markers have already been tested, and is there enough tissue available for the testing that may guide what happens next?
Use the Biomarker Checklist → Take it to your appointment to record what has been confirmed, what has been tested and what still needs to be asked.
What should be looked for in the pathology report?
A pathology report should do two jobs. First, it should show why the cancer is believed to be cholangiocarcinoma rather than a cancer that started somewhere else. Second, it should show whether there are findings that could affect treatment decisions.
Think of the report as an evidence file. It gathers the clues that help establish where the cancer began, what it is doing and what needs to be tested next.
What to look for
- A clear diagnosis and description of the tumour.
- Diagnostic markers that support bile duct origin.
- Markers that may reveal treatment opportunities.
- Tumour differentiation, describing how abnormal the cells look.
- Whether enough tissue remains for comprehensive genomic profiling.
Ask: “Can you show me what in this report supports the diagnosis, what has already been tested, what is missing and whether there is enough tissue left for the next tests?”
Diagnostic markers that support bile duct origin
Immunohistochemistry, or IHC
Visualise IHC as a laboratory scanner reading the ID tags carried by cancer cells. Special stains are placed on the biopsy tissue to show which proteins the cells carry.
No single tag proves where a cancer began. The pathologist reads the complete tag pattern, alongside the scan and the appearance of the cells, to build the strongest answer.
CK7
Think of CK7 as a cell ID tag often carried by bile duct cells. A positive CK7 result can support a bile duct pattern, but it can also appear in other tissues. It is one clue within the full pathology picture.
CK19
Think of CK19 as a second duct-cell ID tag. It is commonly found in cells with bile duct features. When CK7 and CK19 appear together in the right clinical setting, they can strengthen the evidence for a bile duct origin.
CK20
Think of CK20 as a comparison tag that can point towards the digestive tract. It helps the pathologist consider whether the cancer may have begun in the bowel or elsewhere in the gastrointestinal system. CK20 can also appear in some cholangiocarcinomas.
CDX2
Think of CDX2 as a directional signpost towards intestinal tissue. It helps test whether the cancer could have begun in the bowel. It is read alongside the other markers, not in isolation.
SATB2
Think of SATB2 as a stronger signpost towards the lower bowel. It is often used when the team needs to consider or rule out colorectal cancer as the original source.
TTF-1
Think of TTF-1 as a signpost that may point towards lung or thyroid tissue. It can help check whether the cancer may have begun in one of those organs rather than the bile ducts.
PAX8
Think of PAX8 as a signpost for kidney, thyroid or some gynaecological tissues. It helps test whether those possible origins should be considered or excluded.
GATA3
Think of GATA3 as a signpost that can point towards breast or urinary tract tissue. It may be used when the team needs to distinguish cholangiocarcinoma from cancer that began in those areas.
Ask: “Which markers support bile duct origin in my case, and which other possible origins have been considered and ruled out?”
Treatment-opportunity markers to request and confirm
Think of these as option-finding signals. They do not guarantee a treatment. They can show that a treatment discussion or another test should happen earlier.
MMR status
Visualise a cell as a printing room copying its instruction manual before it divides. MMR is the proof-reading team checking every copied page.
MMR means mismatch repair. Its normal job is to find and repair copying mistakes before they become part of the next cell.
Visualise MLH1, PMS2, MSH2 and MSH6 as the four named proofreaders in that team. The report checks whether these proofreaders are present and working.
If the proofreaders are working, the result is usually pMMR, meaning proficient mismatch repair. If one or more proofreaders are missing or not working properly, the result may be dMMR, meaning deficient mismatch repair.
Why it matters: without proof-reading, copying mistakes can build up. This may make the tumour more visible to the immune system and should trigger an early immunotherapy discussion.
MSI status
Visualise MSI as the trail of typos left behind when the proof-reading team fails. MSI means microsatellite instability. It measures whether copying errors have built up in repeated sections of DNA.
An MSI-high result means many errors have built up. It can be linked to dMMR and may be relevant to treatment options, particularly immunotherapy discussions.
PD-L1
Visualise PD-L1 as a false stop sign displayed by a cancer cell to slow an immune attack. It can interact with immune cells and reduce their ability to attack the cancer.
A PD-L1 result may help inform an immunotherapy discussion, but it is only one part of the full picture. A low or negative result does not automatically mean immunotherapy is not relevant.
HER2
Visualise HER2 as a growth antenna on the outside of a cell. It receives growth messages. Too much HER2 signalling can help drive cancer growth.
HER2 is commonly reported on a scale from 0 to 3+. A result of 2+ may need another test to clarify whether HER2 is genuinely driving the cancer and whether a HER2-targeted option should be explored.
Tumour differentiation
Visualise differentiation as how recognisable the original cell remains after cancer has changed it. Well-differentiated cells still look more like the tissue they came from. Poorly differentiated cells look less like normal tissue.
This helps describe the tumour’s biology, but does not determine treatment on its own.
Ask: “Please confirm whether MMR, MSI, PD-L1, HER2 and tumour differentiation have been tested or reported. If something is missing, can it be requested now?”
Why missing markers cost valuable time
Missing information does not always mean a test was negative. It may mean the test was not ordered, there was not enough tissue, the result is still pending or the report does not clearly state it.
Think of this as an incomplete map. The cancer does not wait while information is collected later. If important tests are missing, the team may need to find more tissue, repeat a biopsy or wait for another report before the full range of options can be seen.
Why this matters now
- It may avoid a delayed or repeated biopsy.
- It preserves time for comprehensive genomic profiling.
- It helps treatment decisions begin with the fullest possible picture.
- It reduces the risk that an opportunity is found only after treatment has already started.
Ask: “Can you show me which markers have been tested, which are still missing, whether results are pending and whether enough tissue is available to complete the missing tests?”
Step 6
Understand what is driving the cancer.
Genomic profiling looks deeper into the tumour’s genetic make-up to identify mutations that may be driving its growth, and whether they match clinical trials or other options worth protecting early.
Find the drivers
Test the tumour for changes that may be controlling its growth.
Protect the tissue
Confirm enough suitable tissue is preserved for comprehensive testing.
Match the option
Ask whether a result changes treatment, a trial search or a future pathway.
Keep checking
New trials and treatments can make an existing result relevant later.
Your Next Earlier Right Action
Ask for comprehensive genomic profiling now.
Confirm whether it has been arranged. If tissue is the barrier, ask who with hands-on procedural experience has assessed whether a suitable sample can be obtained.
Use the Genomic Checklist → Take it to your appointment to record what has been confirmed, what has been tested and what still needs to be asked.
What genomic profiling is and why it matters
Genomic profiling
Visualise the tumour as a colony of abnormal cells. Each cell is a City. Its nucleus is City Hall, which holds its Library of Instructions for how to run the City. Genomic profiling reads deeper into those instructions to find faults that may be keeping cancer growth switched on.
The Library is our genome. The chromosomes are the Books, and the genes are Chapters within those Books. The Books are made of DNA. Each gene is a defined stretch of DNA, written as a sequence of chemical letters. A mutation is a change in that DNA sequence.
Pathology helps identify what the cancer looks like. Genomic profiling asks what may be driving it. A result may identify a targeted treatment, immunotherapy discussion or clinical-trial match.
Mutation or actionable alteration
Think of a mutation as an unrepaired error or damage in the DNA sequence within one of the Chapters of City Instructions. An actionable alteration is a fault for which there may already be a treatment, clinical trial or useful next question.
Not every mutation has a current treatment match. Finding one can increase your treatment options now or preserve an option for later.
Please order comprehensive genomic profiling and confirm that the test includes all relevant items on the Genomic Checklist and Biomarker Checklist.
Do not let the tissue window close
A genomic result needs enough suitable cancer tissue. If obtaining tissue is considered difficult, that decision should be assessed directly by the specialist who would perform the procedure, such as an experienced interventional radiologist or advanced endoscopist.
An MDT review is important, but it is not the same as a direct procedural assessment.
Ask: If tissue is the barrier, can I meet the specialist who would decide whether another sample can be obtained safely?
Immune-visibility markers
dMMR and MSI-high
Visualise DNA copying as a printing room. MMR is the proof-reading team. dMMR means that team is not working properly. MSI-high is the trail of repeated copying errors left behind.
These findings can make a tumour more visible to the immune system. They do not guarantee benefit, but should trigger an early immunotherapy discussion.
TMB, tumour mutational burden
Think of TMB as counting the DNA errors found across the tumour tissue sample. A high result means the tumour contains many DNA changes.
More DNA changes can create abnormal proteins. Small pieces of those proteins, called peptides, can be displayed on the cell surface for the immune system to inspect. Think of peptides as ID tags showing the immune system what is being made inside the cell. More changed peptides may give the immune system more chances to recognise the cell as abnormal.
High TMB does not guarantee an immunotherapy response, but it may make an immunotherapy or clinical-trial discussion more relevant, depending on the full clinical picture.
Ask: Were dMMR, MSI and TMB tested, what were the results, and do they change the immunotherapy or trial discussion?
Growth drivers and other actionable alterations
FGFR2 fusion or rearrangement
Visualise FGFR2 as a growth-signal antenna. A fusion or rearrangement can be like wiring joined the wrong way, leaving the antenna switched on and continually receiving or sending growth instructions into the cell.
This can be particularly relevant in intrahepatic cholangiocarcinoma and may create targeted-treatment or trial options.
IDH1 mutation and 2-HG
Visualise IDH1 as a fuel-processing engine inside the Cell City. When the IDH1 gene is mutated, the IDH1 enzyme can become faulty and begin producing an abnormal chemical called 2-HG.
Think of 2-HG as exhaust fumes that fog City Hall, disrupting the instructions that help the cell mature, stay organised and function normally.
If the tumour has an IDH1 R132 mutation , ask about targeted-treatment and clinical-trial options that may match it.
BRAF V600E
Visualise BRAF as part of a growth-message relay. V600E can leave that relay stuck in the “go” position.
If BRAF V600E is present, it creates a BRAF-directed treatment and clinical-trial discussion. The next question is which option is appropriate and accessible in your situation.
HER2 amplification or overexpression
Visualise HER2 as a growth antenna with the volume turned too high. Amplification or overexpression can deliver too many growth instructions.
This may make HER2-directed treatment or clinical-trial options relevant in selected cases.
NTRK fusion
Think of a fusion as two separate instruction chapters joined together incorrectly. This can create a new growth-driving signal.
NTRK fusions are rare but important because they may have targeted-treatment relevance across different cancer types.
RET, MET and BRCA/HRD
Visualise RET and MET as additional growth-signal receivers. BRCA1 and BRCA2 relate to the cell’s ability to repair damaged DNA.
These findings do not apply to every tumour, but broad profiling checks whether they create a treatment or trial opportunity.
Ask: Which actionable alterations were found, which were ruled out, and what does each result change for me now or later?
Turn the result into a pathway
Omico
Omico is Australia’s national precision-oncology program. It can provide comprehensive genomic profiling and help connect molecular results with relevant treatment or clinical-trial opportunities when a patient meets its referral and eligibility requirements.
It is not the only pathway, and a result may still require a separate access or clinical-trial search through Australian Clinical Trials or ClinicalTrials.gov .
Ask: Please ensure that all relevant biomarkers and genomic mutations have been investigated. Explain whether the findings change my treatment, clinical-trial or future options, and whether I am eligible for Omico or another genomic-matching pathway.
If You Become Stuck
Do not let uncertainty become delay.
If an answer is unclear, a referral has stalled or you do not know what should happen next, ask for help early.
You do not need to carry every part of this response alone. Lived experience can help you identify what is missing, what question needs to be asked and what the next Earlier Right Action may be.
An answer is unclear
You have been given information but do not understand what it means or what it changes.
The next step has stalled
A scan, referral, pathology result, procedure or appointment is not moving forward.
An option has been ruled out
Surgery, a biopsy, genomic profiling or a second opinion has been declined and you do not understand why.
You need to prepare
You have an appointment ahead and need to know what records, questions or decisions to bring.
Your Next Earlier Right Action
Call before the delay becomes the decision.
Tell us what has happened, what you have been told and what is missing. We will help you identify the next practical step and the question that needs to be asked.
Important: This is lived-experience navigation. It does not replace your treating team or emergency care. If you have urgent or worsening symptoms, contact your treating team, attend an emergency department or call 000.
Stay Connected
Your options can change.
Stay close to what changes next.
What is available at diagnosis is not always what will be available later. New results, treatment response, clinical trials and access pathways can change the next decision.
Staying connected helps you return to the right question when something changes, rather than relying only on what was known at the beginning.
New evidence arrives
Scan results, pathology, genomic profiling and treatment response can change what needs to be considered next.
New options open
Clinical trials recruit, treatments become available and access pathways can change over time.
Your situation changes
A treatment response, improved drainage, restored fitness or a new specialist review can reopen an earlier conversation.
Keep Your Response Current
Receive the updates that may change what happens next.
Cholangio Today shares new treatment, trial, research and Foundation updates that may matter as your response develops.
Your Response Tools
Keep these guides close.
You do not need to read everything now. Use the guide that matches the decision in front of you, then return when the next question arrives.
Prepare
Questions for your first appointment
Take the questions that help you understand the diagnosis, treatment plan and what must happen next.
Prepare your questions →Protect
Avoid common mistakes
Learn where delay, missing information and incomplete specialist review can quietly narrow future options.
Avoid common mistakes →Preserve
Keep your options open
See the practical actions that preserve records, tissue, specialist review, genomic testing and future treatment choices.
Keep options open →Understand
Treatment options
Understand what each treatment may need to achieve and the options that may be considered as your response develops.
Explore treatment options →See The System
Biliary 101
Understand the bile ducts, bile flow and why obstruction, jaundice, drainage and liver function can change treatment decisions.
Understand the biliary system →Strengthen
Improve your response
Learn how earlier understanding, better questions and Earlier Right Actions can change what happens next.
Improve your response →Common Questions
Return here when a question arrives.
You do not need every answer at once. Start with the question in front of you, understand what it changes and take the next action.
What should I do first after a cholangiocarcinoma diagnosis?
Start by collecting your reports and scan images, confirming where the cancer started and whether it has spread, and asking whether surgery has been assessed by an experienced hepatobiliary surgeon.
Then: confirm pathology and biomarker testing, arrange comprehensive genomic profiling early, and record each answer in your Patient Navigator Journal.
Is cholangiocarcinoma the same as bile duct cancer?
Yes. Cholangiocarcinoma is cancer that starts in the bile ducts, the tubes that carry bile from the liver to the small bowel.
Where it starts matters. Intrahepatic, perihilar and distal cholangiocarcinomas can require different surgery, drainage, biopsy and specialist-review pathways.
Should I seek a second opinion?
A second opinion can be especially important when surgery has been ruled out, the diagnosis or tumour location is unclear, tissue is difficult to obtain or the pathway remains uncertain.
For a surgical decision, ask for direct review by a hepatobiliary surgeon who routinely performs complex cholangiocarcinoma operations. It is not a rejection of your treating team. It is a way to protect an important option.
When should genomic profiling be done?
Comprehensive genomic profiling should be discussed and arranged early. Delaying it can create problems if tumour tissue is later unavailable or another biopsy becomes more difficult.
Ask whether profiling has been ordered, what it tests for, whether enough tissue is preserved and whether you are eligible for Omico or another genomic-matching pathway.
What does “keep options open” mean?
It means protecting future choices before delays, missing information or rushed decisions narrow them.
This includes keeping copies of reports and scans, preserving tissue, obtaining experienced specialist review, arranging genomic profiling early and returning to treatment or trial discussions when the situation changes.
Find The Right Review
The right question needs the right experience.
Cholangiocarcinoma can require different expertise at different points. Seek the specialist whose regular hands-on work matches the decision in front of you.
The Foundation’s community regularly endorses medical professionals who bring relevant experience to complex liver, pancreatic, bile duct and liver-directed treatment decisions.
Hepatobiliary & Transplant Surgeon
Dr Charbel Sandroussi
Complex liver, pancreatic, bile duct and upper gastrointestinal cancer surgery.
View Dr Sandroussi’s website →Hepatobiliary & Transplant Surgeon
A/Prof Koroush Haghighi
Management of complex liver, pancreatic and bile duct cancers, including surgical and transplant-related pathways.
View A/Prof Haghighi’s website →Interventional Oncologist & Radiologist
Dr Chris Rogan
Image-guided liver tumour treatments and liver-directed therapies, including TACE, TARE/Y90 and bland embolisation.
View Dr Rogan’s website →Need The Full List?
Ask for the Foundation’s patient-endorsed professionals list.
Tell us the decision you need reviewed and your location. We can help identify the expertise that may be relevant to that question.
Important: Patient endorsement reflects reported community experience. The most appropriate clinician for an individual patient depends on the diagnosis, tumour location, stage, treatment history and the specialist question that needs to be answered.
Trusted Information
Use information that helps you act.
Good information should make the next question clearer. It should not leave you carrying more uncertainty.
These organisations provide credible Australian and international cancer information. Use them to prepare for an appointment, understand a term or check what further question needs to be asked.
Cancer Council Australia
General cancer information, support resources and connections to Cancer Council services across Australia.
Visit Cancer Council Australia →Cancer Australia
Australian Government cancer information, national data and clinical best-practice resources.
Visit Cancer Australia →ESMO Clinical Practice Guidelines
International clinical guidance on the diagnosis, treatment and management of biliary tract cancers.
Read the ESMO guideline →Use this page as your starting point. Bring the information back to your treating team, record the answer in your Patient Navigator Journal and identify what needs to happen next.
Patient-Led
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.
This is why we exist.
Steve Holmes
Founder and CEO, Cholangiocarcinoma Foundation Australia
