Cholangiocarcinoma Terms & Meanings
Understand the words you hear.
Search the word or phrase your medical team used.
What term did you hear?
Have your pathology or genomic report?
Use the CCA Mutation Matchmaker to see what was tested, what was found, what is not shown, and the questions to ask next.
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CCA Mutation Matchmaker
Audit your pathology or genomic report
See how the Report Audit checks what was tested, identifies what was found, separates information that is not shown or unclear, connects qualifying findings to curated treatment information, and produces priority questions to ask.
Check what was tested
We first look at the type of test, the sample used and what the test was actually capable of finding.
Identify the findings
Important mutations, biomarkers and other treatment-relevant results are identified and explained in plain language.
Find what is missing
Important CCA results that are not shown, incomplete or unclear are separated from results that were actually tested and not detected.
Know what to ask
The audit turns the most important findings and gaps into clear questions to take to your medical team.
Your report will separate results into four states
The result is not just another report
The audit prioritises the findings and gaps most likely to affect treatment understanding, testing or the next decision, then gives you the questions to ask.
Uses a fictional demonstration report. No medical record is uploaded or stored. Do not submit a real medical report yet.
Treatment Goal
What treatment is trying to achieve
These terms explain what the treatment is intended to achieve and whether surgery to remove the cancer is currently possible.
Curative intent
Treatment given with the aim of curing the cancer.
Why this matters
For cholangiocarcinoma, surgery that completely removes the cancer is the established treatment with the potential to cure.
Palliative intent
Treatment aimed at controlling the cancer, reducing symptoms or helping someone live longer when cure is not currently possible.
Why this matters
Palliative does not mean there is nothing more that can be done. Treatment may still actively control the cancer, reduce symptoms and extend life.
Disease control
When treatment shrinks the cancer or stops it growing for a period of time.
Resectable
The cancer is considered removable by surgery.
Why this matters
Surgery that completely removes the cancer is the established treatment with the potential to cure cholangiocarcinoma. Knowing whether surgery is possible is therefore one of the most important decisions after diagnosis.
Unresectable
The cancer is not considered removable by surgery at this time.
Why this matters
Unresectable does not always mean surgery will never be possible. Treatment may sometimes shrink or change the cancer enough for surgery to be reconsidered. An experienced cholangiocarcinoma surgeon may also see a surgical option that others do not.
Around Surgery
Treatment before and after surgery
These terms describe treatment given around surgery and treatment that may help make surgery possible.
Neoadjuvant
Treatment given before surgery.
Why this matters
It may be used to shrink or control the cancer before surgery. In some patients, it may also help make surgery possible when it was not possible at the start.
Adjuvant
Treatment given after surgery.
Why this matters
It is used to reduce the risk of the cancer returning after surgery.
Perioperative
Treatment or medical support given before, during or after surgery.
Downstaging
Treatment used to shrink the cancer or reduce how far it has spread.
Why this matters
If treatment reduces the cancer enough, options that were not possible at diagnosis, including surgery in some patients, may become possible.
Conversion therapy
Treatment given with the aim of making surgery possible when it is not possible at the start.
Why this matters
The aim is to change the cancer enough for surgery to be reconsidered.
Conversion to resectability
When treatment changes the cancer enough for surgery to become possible.
Borderline resectable
Surgery may be possible, but the cancer is close to major blood vessels or other important areas that can make complete removal difficult.
Why this matters
Treatment before surgery may improve the chance of removing the cancer completely. Assessment by a surgeon highly experienced in cholangiocarcinoma is particularly important.
Surgery & Surgical Procedures
Understanding what surgery may involve
These terms explain what surgeons may remove or rebuild to remove cholangiocarcinoma, and what may affect whether surgery is possible.
Resection
Surgery to remove the cancer from the body, together with enough surrounding tissue to try to leave no cancer behind.
Why this matters
Complete surgical removal is the established treatment with the potential to cure cholangiocarcinoma. The operation needed depends on where the cancer is and what nearby structures are involved.
Key question to ask: Is complete surgical removal possible in my case? if not what would I need to do for it to become possible?
Liver resection / Hepatectomy
Surgery that removes the part of the liver containing the cancer. The liver left behind must be large and healthy enough to keep the body functioning after surgery.
Why this matters
The liver can grow after part of it is removed. Sometimes the cancer can technically be removed, but surgery is considered unsafe because too little healthy liver would remain. In selected patients, procedures before surgery can make the liver that will remain grow larger.
Key question to ask: If too little liver would remain, can anything be done before surgery to make it grow?
Extended hepatectomy
A major operation that removes a large part of the liver when a smaller liver resection would not remove all of the cancer.
Why this matters
The main limit may not be whether the cancer can be cut out, but whether enough healthy liver would remain afterwards. The size and health of the liver that will remain therefore become an important part of deciding whether surgery is possible.
Key question to ask: What is preventing an extended liver resection in my case, the cancer itself or the amount of healthy liver that would remain?
Bile duct resection
Surgery that removes the section of bile duct containing the cancer. The remaining bile duct is then reconnected so bile made by the liver can continue to drain into the small intestine.
Why this matters
How much bile duct and what other structures need to be removed depends on where the cancer begins and how far it extends along or beyond the bile ducts.
Whipple procedure
Surgery that removes the head of the pancreas, the lower part of the bile duct, the gallbladder and the duodenum, which is the first part of the small intestine. In some Whipple operations, part of the stomach is also removed.
Why this matters
After these parts are removed, the surgeon reconnects the remaining pancreas and bile duct to the jejunum, the next part of the small intestine. The stomach is also connected so food, bile and pancreatic juices can continue through the digestive system.
For distal cholangiocarcinoma, the cancer is in the lower bile duct close to the pancreas and duodenum. Removing the bile duct alone may therefore not be enough to remove the cancer completely.
Key question to ask: What structures will need to be removed in my Whipple, and how will they be reconnected?
Blood vessel resection and reconstruction
Surgery that removes a section of a major blood vessel involved with the cancer. The vessel is then reconnected or rebuilt so blood can continue to flow.
Why this matters
Cancer touching or involving a major blood vessel does not automatically mean surgery is impossible. In selected patients, surgeons with the necessary experience may be able to remove the involved part of the vessel with the cancer and reconstruct it.
Key question to ask: Is blood vessel involvement the reason I have been told surgery is not possible, and has reconstruction been assessed by a surgeon experienced in this type of cholangiocarcinoma surgery?
Liver transplant
Surgery that removes the entire liver and replaces it with a healthy liver from a donor.
Why this matters
Liver transplant is not a treatment for every cholangiocarcinoma. It may be an option for carefully selected patients, particularly some patients with cancer around the main bile ducts where they leave the liver, when treated through a specialist transplant program.
Patients usually need to meet strict requirements and may receive other treatment before transplantation.
Key question to ask: Could my cancer meet the requirements for assessment by a specialist liver transplant program?
Lymph node dissection
Nearby lymph nodes are removed during surgery and examined under a microscope to see whether cancer cells have reached them.
Why this matters
The result helps show whether the cancer has spread beyond its original location and can affect the cancer stage, the expected risk of recurrence and treatment decisions after surgery.
Key question to ask: How many lymph nodes were removed and how many contained cancer?
Surgical margin
The outer edge of the tissue removed with the cancer. After surgery, a pathologist examines these edges under a microscope to see whether cancer cells reach them.
Why this matters
The aim is to remove the cancer with a clear edge of tissue around it. The margin result helps show whether microscopic cancer may have been left behind.
R0 resection
The cancer has been removed and no cancer cells can be seen under the microscope at the cut edges of the tissue that was removed.
Why this matters
An R0 result means the pathologist found clear microscopic margins around the removed cancer. This is the surgical result surgeons aim for when trying to remove the cancer completely.
R1 resection
The visible cancer has been removed, but cancer cells can still be seen under the microscope at one or more cut edges of the removed tissue.
Why this matters
An R1 result means microscopic cancer may remain where the operation was performed. This can affect the risk of the cancer returning and the treatment recommended after surgery.
Key question to ask: Which margin was involved, and does this change what should happen next?
R2 resection
Surgery where some cancer that can be seen remains in the body because it could not be completely removed.
Why this matters
R2 is different from R1. With R1, remaining cancer is only found under the microscope at the surgical edge. With R2, cancer that can be seen remains after the operation.
Key question to ask: Where does cancer remain, and what treatment options are available for it now?
Treatment Sequence
Where your treatment sits in the plan
These terms describe the order of treatment and how it is given over time.
First-line treatment
The first treatment chosen after the cancer is diagnosed or treatment is needed.
Second-line treatment
Treatment used after the first treatment has stopped working, cannot be continued, or is no longer the best option.
Later-line treatment
Treatment used after one or more earlier treatments.
Line of therapy
A way of describing the order in which cancer treatments have been used.
Treatment regimen
The planned treatments, doses and timing you will receive.
Treatment cycle
A planned period of treatment followed by a set amount of time before treatment repeats.
Combination therapy
Two or more treatments used together.
Maintenance therapy
Ongoing treatment used after the first period of treatment to help keep the cancer controlled.
Why this matters
Maintenance treatment may use fewer drugs, lower doses, or a different treatment schedule than before.
Treatment break
A planned period when treatment is temporarily paused.
Why this matters
A treatment break does not necessarily mean treatment has ended. It may allow time to recover, manage side effects, or simply pause treatment while the cancer remains controlled.
Treatment Response
What scans and tests are showing
These terms describe what is happening to the cancer during or after treatment.
Complete response
No cancer can be seen or measured on the tests being used.
Why this matters
Complete response is an excellent treatment result, but it does not automatically mean the cancer is cured. Ongoing follow-up is still important.
Partial response
The cancer has become smaller, but cancer can still be seen or measured.
Stable disease
The cancer has not changed enough to count as either shrinking or growing.
Why this matters
Stable disease can still mean treatment is working, particularly when the goal is to stop the cancer from growing.
Progressive disease
The cancer has grown, spread, or new areas of cancer have appeared.
Why this matters
Progression usually means the current treatment plan needs to be reviewed and the next available options considered.
No evidence of disease (NED)
No cancer can currently be detected using the tests being performed.
Why this matters
NED describes what can be detected at that point in time. It does not always mean every cancer cell has been eliminated, so follow-up remains important.
Recurrence
Cancer that has come back after treatment or after a period when it could not be detected.
Local recurrence
Cancer that has returned in or near the area where it first developed or was treated.
Metastatic disease
Cancer that has spread from where it started to another part of the body.
Gene Changes & Genomic Testing
What did the test find?
Find the exact words from your report. See what they mean, whether they link to treatment information, and what to ask your doctor.
Start here
Understand the test
These terms explain what was tested and why one genomic report may answer questions that another report does not.
Molecular / Genomic Profiling
Think of this as reading selected parts of the cancer's instruction manual to look for changes that may affect treatment.
What this means for you
What did the test do?It searched the tumour for selected gene changes. The exact genes and types of change checked depend on the test.
Why does that matter?A broad report can reveal a treatment or clinical-trial question—but no test checks everything.
Ask your doctor:Did my test check all the important gene changes and immunotherapy results for cholangiocarcinoma—Yes or No?
NGS / Next-Generation Sequencing
Think of NGS as a scanner that can read many selected cancer genes at the same time.
What this means for you
What did the test do?It read many pieces of genetic material together instead of testing one gene at a time.
Why does that matter?The scanner has limits. A DNA-only test may answer some questions but may not reliably find every fusion. The report should state what its test could detect.
Ask your doctor:Did my NGS test use the right DNA and RNA methods to find every important type of CCA gene change—Yes or No?
Mutation / Gene Change
Think of a gene as an instruction. A mutation is a change in the letters of that instruction.
What this means for you
Why does the exact wording matter?One spelling change may break the instruction, another may alter its job and another may have no known effect.
Ask your doctor:What exact gene change did my report find, and is it classified as harmful—Yes or No?
Somatic Mutation
Think of this as a spelling change that developed inside a cancer cell during your lifetime.
It is not automatically a change you were born with or one that your family carries.
What this means for you
Where was it found?A somatic mutation is found in the tumour. When that cancer cell divides, its new cancer cells can carry the same change.
Why does that matter?The change may help explain how the cancer behaves or reveal a treatment question.
This does not mean the change is inherited. Tumour testing alone may not always settle that question.
Ask your doctor:Is this change only in my cancer, or do I need a separate inherited-gene test?
Germline / Inherited Mutation
Think of this as a spelling change already present in the body's original set of instructions.
It was present from birth and can appear in many cells—not only the cancer.
What this means for you
Why does that matter?A confirmed inherited change may affect your care. Blood relatives may carry the same change and may be offered genetic counselling or testing.
This does not mean every gene change found in a tumour is inherited. Confirmation normally requires testing blood, saliva or another non-cancer sample.
Ask your doctor:Has this change been confirmed as inherited—Yes or No?
Germline / Inherited-Gene Testing
Think of tumour testing as reading the cancer's copy of the instructions.
Inherited-gene testing reads a non-cancer copy—usually from blood or saliva—to see whether the change was present from birth.
What this means for you
Why are two tests needed?A change found in a tumour may exist only in the cancer. Testing a non-cancer sample can help show whether the same change is present throughout the body.
Why does that matter?A confirmed inherited change may affect you and your blood relatives.
Ask your doctor:Do I need a blood or saliva test to find out whether this change is inherited—Yes or No?
Gene Fusion / Rearrangement
Think of two separate instructions being cut and joined together, creating a new instruction that should not exist.
What this means for you
Why does that matter?The joined gene may create a protein that continually sends a cancer-growth signal.
What must be checked?Some tests can find small mutations but may miss fusions. RNA testing can be important for showing that a fusion is active.
Ask your doctor:Could my test reliably find important CCA gene fusions—Yes or No?
Treatment-Linked Gene Change
Think of the gene change as a particular fault in the cancer.
A treatment-linked change means a medicine may exist that was designed to interfere with that fault or what it causes.
What this means for you
Why does the exact result matter?The gene name alone is not enough. The precise mutation, fusion, amplification, score or protein level may determine whether a medicine matches.
What happens next?Your doctor must match the report result with your cancer type, previous treatment, health and access requirements.
This does not mean the medicine is automatically right, approved, available or funded for you.
Ask your doctor:Does this exact finding create a treatment option for me now—Yes or No?
Repeat Molecular Testing
Think of the first genomic report as a photograph of the cancer at one time, using one sample and one type of test.
A later test can take a new photograph.
What this means for you
Why might the picture change?The cancer can change as it grows or responds to treatment. Testing methods and available treatment options can also improve.
How may another test help?A new tissue or blood test may find a change the earlier sample did not contain or the earlier method could not detect.
This does not mean everyone needs another test. The benefit depends on the earlier test, the available sample and the decision your doctor is trying to make.
Ask your doctor:Would testing my cancer again answer an important treatment question—Yes or No?
Category 1
Gene changes linked to treatment
These findings have reviewed treatment information. A link does not mean the treatment is automatically suitable, available or funded for you.
IDH1 Mutation
Think of IDH1 as part of the cell's metabolic support system.
Its normal job is to help process metabolic material into useful products the cell needs to make energy, protect itself from damage and complete repairs.
An IDH1 mutation changes that job.
Treatment information availableWhat this means for you
What has changed?Instead of doing its normal job, the changed IDH1 protein begins producing large amounts of an abnormal chemical called 2-HG.
Think of 2-HG as a toxic chemical cloud building up inside the cell.
It interferes with the systems that control how the cell behaves, matures and repairs itself.
Why does that matter?The abnormal cell can continue surviving and dividing while remaining in this altered state.
When these cancer cells multiply, each new cancer cell can carry the same IDH1 mutation and continue producing 2-HG.
The 2-HG-driven survival system can become part of the biology supporting the tumour.
How may treatment help?Ivosidenib blocks the changed IDH1 protein. This reduces the production of 2-HG and may slow the cancer's growth.
This does not mean ivosidenib repairs the mutation or is automatically right for you.
Ask your doctor:Does my report confirm an IDH1 R132 mutation, and is Tibsovo an option for me now—Yes or No?
FGFR2 Fusion / Rearrangement
Think of FGFR2 as a satellite receiver on the surface of the cell.
Its normal job is to receive growth and repair messages from outside the cell and pass them inside when they are needed.
A fusion can leave that growth signal switched on.
Treatment information availableWhat this means for you
What has changed?Inside the cell's nucleus, part of the FGFR2 gene has joined with part of another gene.
The joined gene creates instructions for an abnormal FGFR2 protein.
Think of the normal FGFR2 protein as a satellite receiver that waits for a growth message from outside the cell.
The abnormal FGFR2 can become active without waiting for that normal outside message.
Why does that matter?The abnormal FGFR2 keeps sending a growth message into the cell when no growth signal was needed.
The cell is repeatedly told to grow and divide.
When these abnormal cells divide, the new cells carry the same FGFR2 fusion and can continue producing the abnormal FGFR2 protein.
The tumour may come to depend heavily on this growth signal.
How may treatment help?FGFR-targeted medicines block the abnormal FGFR2 signalling.
They interrupt the growth message being sent into the cell and may slow the cancer's growth.
This does not mean every FGFR2 result matches an FGFR medicine. The report must confirm a treatment-matching fusion or rearrangement.
Ask your doctor:Does my report confirm a treatment-matching FGFR2 fusion or rearrangement, and is an FGFR2-targeted treatment an option for me now—Yes or No?
HER2 / ERBB2 Alteration
Think of HER2 as a row of growth-message receivers on the surface of the cell.
Their normal job is to pass growth instructions inside only when the cell receives the correct outside message.
Some HER2 changes make that message too loud.
Treatment information availableWhat this means for you
What has changed?The cancer may have extra copies of the HER2 gene, too much HER2 protein on the cell surface or a change within the HER2 gene.
These are different findings. The exact finding and test score matter.
Think of HER2 amplification or overexpression as the cell installing far too many growth-message receivers.
Why does that matter?With too many receivers, the growth message can become much louder than it should be.
The cancer cell can be repeatedly told to grow and divide.
How may treatment help?HER2-targeted medicines recognise HER2-positive cancer cells and interfere with the HER2 growth system.
Different HER2 medicines work differently, so the report result must match the requirements of the medicine.
This does not mean every HER2 or ERBB2 result matches the same treatment. A mutation, amplification and protein score are not interchangeable.
Ask your doctor:What exact HER2 result do I have, and does it meet the requirements for a HER2-targeted treatment—Yes or No?
BRAF V600E Mutation
Think of BRAF as one switch in a relay carrying growth instructions through the cell.
Its normal job is to pass the message onwards when growth is needed, then switch off.
The V600E mutation can jam that switch on.
Treatment information availableWhat this means for you
What has changed?The report has found the specific BRAF mutation called V600E.
The changed BRAF protein can remain active without waiting for the normal growth message.
Think of it as a relay switch jammed in the on position.
Why does that matter?The jammed switch keeps passing the growth message to the next part of the pathway.
The cancer cell can continue receiving instructions to grow and divide.
How may treatment help?Dabrafenib blocks the changed BRAF switch.
Trametinib blocks MEK—the next relay switch in the same pathway. Together they interrupt the growth message at two connected points.
This does not mean every BRAF result matches this treatment. The report must confirm the specific BRAF V600E mutation.
Ask your doctor:Does my report confirm BRAF V600E, and is dabrafenib with trametinib an option for me now—Yes or No?
NTRK Gene Fusion
Think of NTRK as electrical wiring that carries growth and development messages in nerve cells.
The wiring should carry a message only when it is needed.
An NTRK fusion can create a new circuit that stays powered.
Treatment information availableWhat this means for you
What has changed?Inside the cell's nucleus, part of NTRK1, NTRK2 or NTRK3 has joined with part of another gene.
The joined gene creates instructions for an abnormal TRK protein.
Think of it as two wires joined incorrectly, creating a circuit that remains live.
Why does that matter?The abnormal TRK protein can keep sending a growth message without waiting for the normal outside signal.
The cancer cell can be repeatedly told to survive, grow and divide.
How may treatment help?TRK-targeted medicines block the abnormal TRK signalling.
They interrupt the live circuit and may slow the cancer's growth.
This does not mean seeing NTRK on the list of genes tested confirms an NTRK fusion. The report must clearly state that a treatment-matching fusion was found.
Ask your doctor:Does my report confirm a treatment-matching NTRK fusion, and is a TRK-targeted treatment an option for me now—Yes or No?
RET Gene Fusion
Think of RET as a doorbell that sends a growth and development message into the cell.
It should ring only when the correct outside signal presses it.
A RET fusion can leave the doorbell pressed down.
Treatment information availableWhat this means for you
What has changed?Inside the cell's nucleus, part of RET has joined with part of another gene.
The joined gene creates instructions for an abnormal RET protein that can become active without waiting for the normal outside message.
Think of it as a doorbell stuck down and ringing continuously.
Why does that matter?The abnormal RET protein keeps sending a growth message into the cell.
The repeated signal can help the cancer cell survive, grow and divide.
How may treatment help?Selpercatinib blocks the abnormal RET signalling.
It interrupts the message being sent into the cell and may slow the cancer's growth.
This does not mean seeing RET on the list of genes tested confirms a RET fusion. The report must clearly state that a treatment-matching fusion was found.
Ask your doctor:Does my report confirm a treatment-matching RET fusion, and is selpercatinib an option for me now—Yes or No?
Category 2
Results that may open an immunotherapy option
These are not individual gene mutations. They describe patterns that may help the immune system recognise the cancer.
MSI-H / MSI-High
Think of DNA repair as the cell's spell-checker. MSI-high means many copying mistakes have accumulated because that checking system is not working properly.
Treatment information availableWhat this means for you
What has changed?The cancer has built up many repeated DNA copying mistakes.
Picture what is happeningImagine a document copied again and again with a broken spell-checker. More mistakes remain every time it is copied.
Why does that matter?The extra mistakes may make the cancer look more unusual to the immune system and easier for immune cells to recognise.
How may treatment help?Keytruda releases a brake on the immune system so it can attack cells it recognises as abnormal.
Why this result is importantSome people with MSI-high cancers can have a strong and long-lasting response to immunotherapy. This does not guarantee that Keytruda will work or cure the cancer.
Ask your doctor:Does my MSI-high result make Keytruda an option for me—Yes or No?
dMMR / Mismatch Repair Deficient
dMMR means part of the cell's DNA spell-checking system is missing or not working.
Treatment information availableWhat this means for you
What has changed?One or more parts of the mismatch-repair system are not working properly.
Picture what is happeningThe cell is copying DNA with a broken spell-checker. Mistakes can remain and build up.
Why does that matter?Those mistakes may make the cancer easier for the immune system to recognise.
How may treatment help?Keytruda releases a brake on the immune system so it can attack cells it recognises as abnormal.
One problem described two waysdMMR describes the broken repair system. MSI-high describes the pattern of mistakes it can leave behind. They may identify the same treatment pathway and should not be counted as two separate opportunities.
Ask your doctor:Does my dMMR result make Keytruda an option for me—Yes or No?
TMB-High / High Tumour Mutational Burden
Think of each DNA change as another unusual flag carried by the cancer cells.
TMB counts how many of these changes were found in a measured amount of tumour DNA.
TMB-high means the test found an unusually large number.
Treatment may be relevant — conditions applyWhat this means for you
What has changed?The test found many DNA changes within the measured amount of tumour DNA.
Think of the cancer cell as carrying many unusual flags created by those changes.
Why does that matter?The flags may make the cancer look more unusual to the immune system and easier for immune cells to recognise.
How may treatment help?Keytruda releases a brake on the immune system.
This may help immune cells attack cancer cells they recognise as abnormal.
What must be checked?The report must show the TMB number, its units and whether a validated test classifies it as high.
In Australia, the relevant Keytruda indication uses at least 10 mutations per megabase and includes additional treatment conditions.
This does not mean every TMB number creates an immunotherapy option or that Keytruda will work.
Ask your doctor:Is my result confirmed as TMB-high by a validated test, and does it make Keytruda an option for me—Yes or No?
Category 3
Other gene changes found on reports
These findings may still matter. They do not currently have an established CCA treatment link in this reviewed library.
ATM Alteration
Think of ATM as the cell's damage alarm.
Its normal job is to notice serious DNA damage, stop the cell and call in the repair team.
An ATM alteration may weaken that alarm.
Clinical-trial search availableWhat this means for you
What has changed?Your report found a change in ATM. The exact change and the laboratory's classification determine whether ATM is likely to have stopped working properly.
Picture what is happeningThink of a smoke alarm that is damaged or no longer loud enough.
DNA damage can build up without the cell stopping promptly and calling the repair team.
Why could that matter?A harmful ATM alteration may help the cancer survive while carrying damaged DNA.
Some clinical trials are designed for cancers with faults in ATM or the wider DNA-repair system.
What is known todayThere is no established CCA medicine in this library matched directly to ATM. However, the exact ATM result may still create a clinical-trial question.
This does not mean an ATM trial will accept you. The trial team must check the exact alteration, your type of CCA, previous treatments, general health and every other entry rule.
Your next action
Find trials for this result
Start with trials in Australia. Then check trials in other countries.
View possible ATM trialsAsk your doctor:Is my exact ATM alteration harmful, and does it meet the ATM requirement for any clinical trial—Yes or No?
View possible ATM trials
Possible trials—not confirmed eligibility
Current trials that may be relevant
You do not need to search. We check for trials mentioning ATM, related DNA-repair faults and cancers that may include cholangiocarcinoma.
Appearing here does not mean you can join. Your exact ATM alteration, type of CCA, previous treatments, health and every trial entry rule still need to be confirmed.
Take this question to your doctor:My report found an ATM alteration. Does my exact result meet the entry requirements for any of these trials—Yes or No?
KRAS Mutation
Think of KRAS as an on-and-off switch that carries growth instructions inside the cell.
Treatment research is emergingWhat this means for you
What has changed?A harmful KRAS mutation can jam the switch in its active position.
Picture what is happeningThink of a growth switch stuck on. The cell keeps receiving an instruction to grow even when no new message has arrived.
Why could that matter?The exact KRAS change—such as G12C, G12D or G12V—matters because research treatments may be designed for only one change or one group of changes.
What is known todayThis library does not list an established KRAS-targeted CCA treatment. The linked medicine is emerging research information, not proof that a trial is available or suitable.
Ask your doctor:What exact KRAS change do I have, and is there a clinical trial that accepts this exact change—Yes or No?
BRCA1 Alteration
Think of BRCA1 as part of a precision repair crew that fixes serious breaks in DNA.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful BRCA1 change can weaken the cell's ability to repair broken DNA accurately.
Picture what is happeningThink of a repair crew working without one of its key specialists. More DNA damage may be patched badly or left unrepaired.
Why could that matter?The exact change may affect clinical-trial discussions. Some BRCA1 changes are also inherited, but a result found in the tumour does not prove this.
What is known todayThis library does not list an established CCA treatment matched directly to BRCA1.
Ask your doctor:Is my BRCA1 change harmful, and do I need treatment review and a separate inherited-gene test—Yes or No?
BRCA2 Alteration
Think of BRCA2 as part of a precision repair crew that rebuilds serious breaks in DNA.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful BRCA2 change can stop the repair crew placing the correct DNA material into a break.
Picture what is happeningThink of a repair crew missing the correct replacement parts. DNA damage can build up or be repaired inaccurately.
Why could that matter?The exact change may affect clinical-trial discussions. Some BRCA2 changes are inherited, but a tumour result alone does not prove this.
What is known todayThis library does not list an established CCA treatment matched directly to BRCA2.
Ask your doctor:Is my BRCA2 change harmful, and do I need treatment review and a separate inherited-gene test—Yes or No?
PALB2 Alteration
Think of PALB2 as the connector that brings BRCA1 and BRCA2 into the same DNA-repair crew.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful PALB2 change can make it harder for the BRCA repair team to assemble and repair serious DNA breaks.
Picture what is happeningThink of a broken link between two repair specialists. Both may be present, but they cannot work together properly.
Why could that matter?The finding may raise treatment, clinical-trial and inherited-risk questions. A tumour result does not prove the change was inherited.
What is known todayThis library does not list an established CCA treatment matched directly to PALB2.
Ask your doctor:Is my PALB2 change harmful, and do I need treatment review and a separate inherited-gene test—Yes or No?
TP53 Alteration
Think of TP53 as a safety inspector. It can pause a damaged cell for repairs or tell a badly damaged cell to shut down.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful TP53 change can weaken this safety inspection.
Picture what is happeningThink of a factory continuing to operate after its safety inspector has been removed.
Why could that matter?Damaged cells may continue surviving and dividing. TP53 changes are common in cancer, but this result alone does not select a standard CCA treatment.
Ask your doctor:Does my exact TP53 result change my treatment, testing or clinical-trial options—Yes or No?
ARID1A Alteration
Think of ARID1A as part of a librarian team that opens the correct sections of DNA so the cell can read the right instructions.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful ARID1A change can disrupt how DNA is organised and which instructions are made available.
Picture what is happeningThink of a librarian opening the wrong instruction books and leaving the right ones closed.
Why could that matter?The cell may use growth and survival instructions at the wrong time. ARID1A is being studied, but it does not currently select a standard CCA treatment in this library.
Ask your doctor:Is my ARID1A change harmful, and is there a clinical trial that accepts it—Yes or No?
BAP1 Alteration
Think of BAP1 as part of the cell's quality-control team, helping manage DNA, damage responses and cell growth.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful BAP1 change can weaken several controls that help the cell organise DNA and respond to damage.
Picture what is happeningThink of a quality-control desk no longer checking every problem before production continues.
Why could that matter?The finding may help explain the cancer's biology. Some BAP1 changes can be inherited, but a tumour result alone does not prove this.
Ask your doctor:Is my BAP1 change harmful, and do I need clinical-trial review or a separate inherited-gene test—Yes or No?
PBRM1 Alteration
Think of PBRM1 as part of the team that arranges DNA so the cell opens the correct instructions at the correct time.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful PBRM1 change can disturb how DNA is packaged and read.
Picture what is happeningThink of an instruction manual with the wrong pages left open.
Why could that matter?The cell may use the wrong instructions. This finding may describe the cancer, but it does not currently select a standard CCA treatment here.
Ask your doctor:Is my PBRM1 change harmful, and does it change my treatment or clinical-trial options—Yes or No?
CDKN2A Alteration
Think of CDKN2A as part of the checkpoint that decides whether a cell is allowed to divide.
No established CCA treatment link listedWhat this means for you
What has changed?CDKN2A may be lost, deleted or damaged, weakening an important stop signal.
Picture what is happeningThink of a checkpoint gate stuck open. Cells can pass through and divide when they should be stopped.
Why could that matter?The lost control may help the cancer grow. The result may support a clinical-trial discussion but does not currently select a standard CCA treatment here.
Ask your doctor:Does my CDKN2A result change my treatment or clinical-trial options—Yes or No?
CDKN2B Alteration
Think of CDKN2B as another checkpoint brake that helps stop cells dividing too quickly.
No established CCA treatment link listedWhat this means for you
What has changed?CDKN2B may be lost or damaged. CDKN2A and CDKN2B can be deleted together, so the report should be read carefully.
Picture what is happeningThink of a second brake disappearing from the same growth-control system.
Why could that matter?The cell may have less control over when it divides. This does not currently select a standard CCA treatment here.
Ask your doctor:Were CDKN2A and CDKN2B both affected, and does this change my treatment or clinical-trial options—Yes or No?
PIK3CA Alteration
Think of PIK3CA as part of an internal supply line that tells a cell when to grow, survive and use nutrients.
No established CCA treatment link listedWhat this means for you
What has changed?Some PIK3CA changes can make this supply line stay too active.
Picture what is happeningThink of a fuel valve stuck open, continually supporting growth and survival.
Why could that matter?The exact PIK3CA change matters and may support a clinical-trial discussion, but it does not currently select a standard CCA treatment here.
Ask your doctor:Is my exact PIK3CA change harmful, and is there a clinical trial that accepts it—Yes or No?
SMAD4 Alteration
Think of SMAD4 as a messenger that carries important control instructions from the cell's surface to its nucleus.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful SMAD4 change can interrupt messages that normally help control cell growth and behaviour.
Picture what is happeningThink of a stop message that never reaches the control room.
Why could that matter?The cell may no longer respond properly to growth-control instructions. This result helps describe the cancer but does not currently select a standard CCA treatment here.
Ask your doctor:Does my SMAD4 result change my treatment, testing or clinical-trial options—Yes or No?
IDH2 Alteration
Think of IDH2 as part of the cell's metabolic machinery inside its energy-producing mitochondria.
No established CCA treatment link listedWhat this means for you
What has changed?Some IDH2 mutations can change the protein's job and make the abnormal chemical 2-HG.
Picture what is happeningLike changed IDH1, changed IDH2 may create a toxic chemical cloud inside the cell—but IDH2 and IDH1 are different genes.
Why could that matter?The chemical can interfere with normal cell control. An IDH2 result does not automatically match an IDH1 medicine such as Tibsovo.
Ask your doctor:Does my report confirm a harmful IDH2—not IDH1—mutation, and is there a clinical trial that accepts it—Yes or No?
MET Alteration
Think of MET as a repair-and-growth antenna on the cell. It normally turns on when the cell receives the correct outside signal.
No established CCA treatment link listedWhat this means for you
What has changed?The report may show a MET mutation, extra gene copies called amplification, or another type of change. These results are not interchangeable.
Picture what is happeningSome changes can act like too many antennas or an antenna sending too loudly.
Why could that matter?The stronger signal may support cancer growth. The exact MET change determines whether it has any treatment or trial relevance.
Ask your doctor:What exact MET change did my report find, and is there a treatment or clinical trial that accepts it—Yes or No?
NF1 Alteration
Think of NF1 as a brake that helps turn off the RAS growth pathway after its job is done.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful NF1 change can weaken or remove that brake.
Picture what is happeningThink of a car losing a brake while its growth engine is running.
Why could that matter?The growth pathway may remain active for too long. This does not currently select a standard CCA treatment here. Some NF1 findings may require separate inherited-risk review.
Ask your doctor:Is my NF1 change harmful, and does it affect clinical-trial or inherited-testing options—Yes or No?
PTEN Alteration
Think of PTEN as a brake that limits a powerful cell-growth and survival pathway.
No established CCA treatment link listedWhat this means for you
What has changed?PTEN may be lost, deleted or damaged, reducing its ability to control the pathway.
Picture what is happeningThink of a growth accelerator with a weakened brake.
Why could that matter?The cell may receive stronger survival and growth signals. This does not currently select a standard CCA treatment here. Some findings may require inherited-risk review.
Ask your doctor:Is my PTEN change harmful, and does it affect clinical-trial or inherited-testing options—Yes or No?
STK11 Alteration
Think of STK11 as an energy supervisor that helps a cell slow growth when fuel is running low.
No established CCA treatment link listedWhat this means for you
What has changed?A harmful STK11 change can weaken the signal telling the cell to conserve energy and stop growing.
Picture what is happeningThink of a factory continuing at full speed after its fuel warning light has failed.
Why could that matter?The abnormal cell may keep growing under conditions that should make it slow down. Some STK11 changes can be inherited, but a tumour result alone does not prove this.
Ask your doctor:Is my STK11 change harmful, and does it affect clinical-trial or inherited-testing options—Yes or No?
Another Gene Change on Your Report
Think of your genomic report as one page from a very large instruction manual.
It may name a gene change that this reviewed library does not yet explain.
Needs individual reviewWhat to do next
What needs to happen?The exact gene, exact change and laboratory classification need individual review.
Why does that matter?Different changes in the same gene can behave differently. One may be harmful, another harmless and another still uncertain.
What should be checked?Your medical team can check whether the finding affects treatment, needs another test or matches the entry rules for a clinical trial.
Not being listed here does not mean the finding is unimportant or that no treatment or trial exists.
Ask your doctor:Is this exact gene change important, and does it affect my treatment, further testing or clinical-trial options—Yes or No?
Category 4
Other genomic test results
These results still matter, but they do not activate the treatment pathways described above.
MSS / Microsatellite Stable
The test did not find the repeated DNA-copying mistake pattern called MSI-high.
Result recordedWhat this means for you
Picture what the result meansThe test did not see the pattern expected from a badly broken DNA spell-checker.
Why does that matter?This result does not create the MSI-high treatment pathway. It does not answer every other question about immunotherapy.
Ask your doctor:Does my MSS result leave any other reason to consider immunotherapy—Yes or No?
pMMR / Mismatch Repair Proficient
The tested parts of the cell's DNA spell-checking system appear to be present and working.
Result recordedWhat this means for you
Picture what the result meansThe four commonly tested spell-checker proteins were retained rather than missing.
Why does that matter?This result does not create the dMMR treatment pathway. It does not answer every other question about immunotherapy.
Ask your doctor:Does my pMMR result leave any other reason to consider immunotherapy—Yes or No?
Clinical content baseline: ESMO biliary tract cancer guideline interim update.Every result and treatment decision must be confirmed with the treating team. Content reviewed: September 2026.
Cancer Treatments & Medicines
What the treatment does and why you may be given it
Search a treatment or medicine you have been offered or heard about. Each explanation tells you what it is, what it does to the cancer or immune system, why it may be used and what makes it relevant to you.
Gemcitabine + Cisplatin + Durvalumab
Three medicines used together to treat advanced cholangiocarcinoma. Two attack cancer cells directly. The third helps the immune system attack them.
Established CCA treatmentHow this treatment works
What is it? Gemcitabine and cisplatin are chemotherapy medicines. Durvalumab is an immunotherapy medicine.
What does it actually do? Think of the cancer cell as a factory copying an instruction manual while hiding from the body's security guards. Gemcitabine places false building pieces into the new copy. Cisplatin fastens pages of the manual together so they cannot be read normally. Durvalumab stops the cancer sending a stand-down message to immune guards.
These medicines do not repair the cancer cell. They attack three different systems it uses to survive and multiply.
Why might I be given it? It is commonly used when cholangiocarcinoma cannot currently be removed by surgery or has spread to other parts of the body.
What makes it relevant to me? You do not need a particular mutation for this combination. Your diagnosis, how far the cancer has spread, your previous treatment and whether your body can safely receive the medicines help determine whether it is suitable.
Gemcitabine
A chemotherapy medicine that disrupts cancer cells as they try to make more cancer cells.
Used in CCAHow this medicine works
What is it? A chemotherapy medicine used to treat several cancers, including cholangiocarcinoma.
What does it actually do? Think of a cancer cell trying to build a fresh copy of its DNA before it divides. Gemcitabine looks like one of the building pieces the cell needs, but it is a false piece. The cancer cell takes it in and has difficulty completing a working copy.
Gemcitabine does not repair the damaged DNA. It interferes with the cancer cell's attempt to make a new copy.
Why might I be given it? It is often combined with other medicines to slow, shrink or control cholangiocarcinoma.
What makes it relevant to me? You do not need a particular mutation for gemcitabine to be considered.
Cisplatin
A chemotherapy medicine that damages the instructions inside cancer cells so they have more difficulty dividing and surviving.
Used in CCAHow this medicine works
What is it? A chemotherapy medicine commonly used with gemcitabine.
What does it actually do? Think of DNA as the cancer cell's instruction manual. Cisplatin fastens parts of its pages together. The cancer cell has difficulty opening, reading and copying those instructions. If enough damage builds up, the cell may stop dividing or die.
Cisplatin does not correct the cancer's instructions. It damages the manual the cancer cell needs to keep dividing.
Why might I be given it? It is commonly combined with gemcitabine and an immunotherapy as an initial treatment for advanced cholangiocarcinoma.
What makes it relevant to me? You do not need a particular mutation. Kidney function, hearing, general health and previous treatment can affect whether cisplatin is safe for you.
Durvalumab / Imfinzi
An immunotherapy medicine that helps stop cancer switching off immune cells that could attack it.
Established CCA treatmentHow this medicine works
What is it? An immunotherapy medicine that helps the body's own immune system keep attacking cancer.
What does it actually do? Think of an immune cell as a security guard. Cancer can display a PD-L1 message that tells the guard to stand down. Imfinzi covers the cancer's PD-L1 message, making it harder for the cancer to switch the guard off. The immune cell may then continue its attack.
Imfinzi does not attack the cancer directly. It blocks one way the cancer tells immune guards to stand down.
Why might I be given it? It can be used with gemcitabine and cisplatin as an initial treatment for advanced biliary tract cancer.
What makes it relevant to me? When used with gemcitabine and cisplatin, you do not need a particular mutation or a positive PD-L1 test.
Gemcitabine + Cisplatin + Pembrolizumab
Three medicines used together to treat advanced cholangiocarcinoma. Two attack cancer cells directly. The third helps the immune system attack them.
Established CCA treatmentHow this treatment works
What is it? Gemcitabine and cisplatin are chemotherapy medicines. Pembrolizumab is an immunotherapy medicine.
What does it actually do? Think of the cancer cell as a factory copying an instruction manual while hiding from the body's security guards. Gemcitabine places false building pieces into the new copy. Cisplatin fastens pages of the manual together so they cannot be read normally. Keytruda blocks a stand-down message received by immune guards.
These medicines do not repair the cancer cell. They attack three different systems it uses to survive and multiply.
Why might I be given it? It can be used as an initial treatment when cholangiocarcinoma cannot currently be removed by surgery or has spread.
What makes it relevant to me? You do not need a particular mutation for this combination to be considered.
Pembrolizumab / Keytruda
An immunotherapy medicine that helps stop cancer switching off immune cells that could attack it.
Used in CCAHow this medicine works
What is it? An immunotherapy medicine that helps the body's immune system keep attacking cancer.
What does it actually do? Think of an immune cell as a security guard. Cancer can press a PD-1 brake that tells the guard to stand down. Keytruda covers that brake, making it harder for the cancer to switch the guard off. The immune cell may then continue its attack.
Keytruda does not directly kill the cancer cell. It blocks one way the cancer tells immune guards to stand down.
Why might I be given it? It can be given with gemcitabine and cisplatin as an initial treatment for advanced cholangiocarcinoma. It may also be considered on its own when testing finds certain features that suggest the immune system may be more likely to recognise the cancer.
What makes it relevant to me? When used with gemcitabine and cisplatin, you do not need a particular mutation. When it is considered on its own, findings such as MSI-H, dMMR or TMB-high can be important.
Capecitabine / Xeloda
A chemotherapy tablet commonly used after surgery to reduce the chance of cholangiocarcinoma returning.
Established after-surgery CCA treatmentHow this medicine works
What is it? A chemotherapy medicine taken as tablets. Your body changes it into another chemotherapy medicine called 5-FU.
What does it actually do? Think of surgery as removing the visible weeds from a garden. Very small cancer cells may remain like seeds that cannot yet be seen on a scan. Your body changes capecitabine into 5-FU. The 5-FU interferes when those hidden cells try to copy their DNA and divide.
Capecitabine cannot prove that hidden cancer cells remain. It is used to reduce the chance that any remaining cells can grow.
Why might I be given it? It may be offered after surgery even when all visible cancer has been removed because tiny cancer cells may still remain.
What makes it relevant to me? It is mainly relevant because you have had surgery to remove the cancer, not because your cancer has a particular mutation.
FOLFOX
A chemotherapy combination that may be used when an earlier treatment is no longer controlling advanced cholangiocarcinoma.
Established later-line CCA optionHow this treatment works
What is it? A combination of three medicines called 5-FU, leucovorin and oxaliplatin.
What does it actually do? Think of the cancer cell as a factory copying its instruction manual. 5-FU places false building pieces into the new copy. Leucovorin tightens 5-FU's grip on the copying machinery. Oxaliplatin fastens pages of the manual together so they cannot be read normally.
FOLFOX does not repair the cancer cell. It makes it harder for the cell to read, copy and pass on its instructions.
Why might I be given it? It may be considered if advanced cholangiocarcinoma starts growing again after an earlier treatment.
What makes it relevant to me? You do not need a particular mutation. It becomes relevant mainly because an earlier treatment is no longer controlling the cancer.
Fluorouracil / 5-FU
A chemotherapy medicine that disrupts cancer cells as they try to make more cancer cells.
Used in CCAHow this medicine works
What is it? A chemotherapy medicine often used as part of a combination such as FOLFOX.
What does it actually do? Think of a cancer cell trying to build a fresh copy of its DNA before it divides. 5-FU looks like material the cell needs, but it acts as a false building piece. The copying process is disrupted.
5-FU does not correct the cancer's instructions. It interferes with the copying process the cell needs to multiply.
Why might I be given it? It may be used as part of another chemotherapy combination after an earlier treatment has stopped controlling the cancer.
What makes it relevant to me? You do not need a particular mutation for 5-FU to be considered.
Leucovorin / Folinic acid
A medicine given with 5-FU to help the 5-FU work more strongly against cancer cells.
Part of FOLFOXHow this medicine works
What is it? A medicine used alongside 5-FU. It is not usually used to attack the cancer by itself.
What does it actually do? Think of 5-FU trying to hold onto the cancer cell's copying machinery. Leucovorin tightens that grip and helps 5-FU remain attached for longer. This makes 5-FU's interruption of the copying process stronger.
Leucovorin is the helper. It strengthens 5-FU rather than attacking the cancer by itself.
Why might I be given it? It is included to strengthen the effect of 5-FU in treatment combinations such as FOLFOX.
What makes it relevant to me? It becomes relevant when your treatment includes 5-FU as part of FOLFOX or another similar combination.
Oxaliplatin
A chemotherapy medicine that damages the instructions inside cancer cells so they have more difficulty dividing and surviving.
Used in CCAHow this medicine works
What is it? A chemotherapy medicine and one of the medicines used in FOLFOX.
What does it actually do? Think of DNA as the cancer cell's instruction manual. Oxaliplatin fastens parts of its pages together. The cancer cell has difficulty opening, reading and copying those instructions. If enough damage builds up, the cell may stop dividing or die.
Oxaliplatin does not correct the cancer's instructions. It damages the manual the cancer cell needs to keep dividing.
Why might I be given it? It is commonly combined with 5-FU and leucovorin in FOLFOX.
What makes it relevant to me? You do not need a particular mutation for oxaliplatin to be considered.
Ivosidenib / Tibsovo
A targeted medicine for cholangiocarcinoma with an IDH1 R132 mutation.
IDH1-matched CCA treatmentHow this medicine works
What is it? A tablet designed to block the changed IDH1 protein in cancers with an IDH1 R132 mutation.
What does it actually do? Think of IDH1 as part of the cell's metabolic support system. A changed IDH1 protein stops doing its normal job and produces large amounts of an abnormal chemical called 2-HG.
Tibsovo blocks the changed IDH1 protein's function. This greatly reduces the production of 2-HG. As the chemical cloud begins to clear, the abnormal chemical pressure inside the cell is reduced. The tumour loses part of the survival system created by the IDH1 mutation.
Tibsovo does not repair the mutation. It blocks what the mutation is doing.
Why might I be given it? It may be an option after previous systemic treatment when locally advanced or metastatic cholangiocarcinoma has a confirmed IDH1 R132 mutation.
What makes it relevant to me? Testing must confirm an IDH1 R132 mutation in your cancer. Your previous treatment and current medical situation must also meet the treatment requirements.
What does this not promise? A matching mutation does not guarantee that Tibsovo is suitable for you or that it will control the cancer.
Ask your doctor: Does my report confirm an IDH1 R132 mutation, and is Tibsovo an option for me now—Yes or No?
Pemigatinib / Pemazyre
A targeted medicine for cholangiocarcinoma with an FGFR2 fusion or rearrangement.
FGFR2-matched CCA treatmentHow this medicine works
What is it? A tablet designed to block abnormal signalling from FGFR proteins, including FGFR2.
What does it actually do? Think of FGFR2 as a satellite receiver on the cell. Normally, it receives a growth signal from outside the cell, processes it and passes the growth message inside.
An FGFR2 fusion changes the receiver. The abnormal receiver no longer needs an outside growth signal to activate.
Pemazyre blocks this abnormal receiver. The continuous growth message is interrupted. The tumour loses part of the growth system it may have become dependent on.
Pemazyre does not repair the FGFR2 fusion. It blocks what the fusion is doing.
Why might I be given it? It may be used after previous systemic treatment when locally advanced or metastatic cholangiocarcinoma has an FGFR2 fusion or rearrangement that matches the treatment requirements.
What makes it relevant to me? Testing must confirm a treatment-matching FGFR2 fusion or rearrangement in your cancer.
What does this not promise? A matching fusion does not guarantee that Pemazyre is suitable for you or that it will control the cancer.
Futibatinib / Lytgobi
A targeted medicine for intrahepatic cholangiocarcinoma with an FGFR2 fusion or rearrangement.
FGFR2-matched CCA treatmentHow this medicine works
What is it? A tablet designed to block abnormal signalling from FGFR proteins, including FGFR2.
What does it actually do? Think of FGFR2 as a satellite receiver on the cell. Normally, it receives a growth signal from outside the cell, processes it and passes the growth message inside.
An FGFR2 fusion changes the receiver. The abnormal receiver no longer needs an outside growth signal to activate.
Lytgobi attaches tightly to this abnormal receiver and blocks its activity. The continuous growth message is interrupted. The tumour loses part of the growth system it may have become dependent on.
Lytgobi does not repair the FGFR2 fusion. It blocks what the fusion is doing.
Why might I be given it? It may be used after previous systemic treatment when locally advanced or metastatic intrahepatic cholangiocarcinoma has an FGFR2 fusion or rearrangement that matches the treatment requirements.
What makes it relevant to me? Testing must confirm a treatment-matching FGFR2 fusion or rearrangement in your cancer.
What does this not promise? A matching fusion does not guarantee that Lytgobi is suitable for you or that it will control the cancer.
Zanidatamab / Ziihera
A treatment for some cancers with too much HER2 on the surface of the cancer cells.
HER2-matched BTC treatmentHow this medicine works
What is it? A medicine designed to find and attach to HER2 on the surface of cancer cells.
What does it actually do? Think of HER2 as a row of satellite receivers on the cancer cell. Normally, these receivers pass growth messages inside only when they are needed. Some cancer cells install far too many HER2 receivers, making the growth message much louder. Ziihera grips each HER2 receiver in two places. This disrupts the growth signal and can also help the immune system recognise the cancer cell.
Ziihera does not remove the HER2 result. It targets the excessive HER2 system on the cancer cell.
Why might I be given it? It may be used in previously treated advanced biliary tract cancer when the cancer tests strongly positive for HER2.
What makes it relevant to me? Your cancer must show the required high level of HER2.
Trastuzumab deruxtecan / Enhertu
A HER2-targeted medicine that finds HER2-positive cancer cells and carries chemotherapy to them.
HER2-matched solid-tumour treatmentHow this medicine works
What is it? A medicine that combines a HER2-targeting part with chemotherapy.
What does it actually do? Think of HER2 as an address label displayed on the cancer cell. Enhertu has one part that reads and attaches to that HER2 address. Attached to it is a chemotherapy payload. After the medicine reaches the address, the chemotherapy is released into or close to the cancer cell and can damage it and nearby cancer cells.
Enhertu does not repair HER2. It uses HER2 as an address for delivering chemotherapy.
Why might I be given it? It may be considered in previously treated advanced cancers that test strongly positive for HER2, including some biliary tract cancers.
What makes it relevant to me? Your cancer must show a sufficiently high level of HER2.
Dabrafenib + Trametinib
Two targeted medicines used together when the cancer has a specific mutation called BRAF V600E.
BRAF V600E-matched treatmentHow this treatment works
What is it? Two medicines designed to block the same cancer-growth pathway at two different points.
What does it actually do? Think of the cancer's growth message travelling through a line of relay switches. BRAF is one switch and MEK is the next. A BRAF V600E mutation jams the BRAF switch on, so it keeps passing the message to MEK. Dabrafenib blocks the changed BRAF switch. Trametinib blocks the MEK switch further along the same line.
These medicines do not repair BRAF V600E. They interrupt the growth message at two connected points.
Why might I be given it? It may be considered when an advanced cancer has the BRAF V600E mutation and previous treatment is no longer suitable or effective.
What makes it relevant to me? Your cancer must have the specific BRAF V600E mutation.
Larotrectinib / Vitrakvi
A targeted medicine for cancers with a rare change called an NTRK gene fusion.
NTRK fusion-matched treatmentHow this medicine works
What is it? A medicine designed specifically for cancers being driven by an NTRK fusion.
What does it actually do? Think of an NTRK fusion as two wires joined incorrectly, creating a circuit that stays live. The live circuit keeps sending a growth message into the cancer cell. Vitrakvi blocks the abnormal TRK signal carried by that circuit. The continuous growth message is interrupted.
Vitrakvi does not repair the fusion. It blocks the growth signal the fusion creates.
Why might I be given it? It may be considered when an advanced cancer has an NTRK fusion and other suitable treatment options are not available.
What makes it relevant to me? Testing must find an NTRK gene fusion in your cancer.
Entrectinib / Rozlytrek
A targeted medicine for some cancers with a rare change called an NTRK gene fusion.
NTRK fusion-matched treatmentHow this medicine works
What is it? A medicine that can block the abnormal growth signal created by an NTRK fusion.
What does it actually do? Think of an NTRK fusion as two wires joined incorrectly, creating a circuit that stays live. The live circuit keeps sending a growth message into the cancer cell. Rozlytrek blocks the abnormal TRK signal carried by that circuit. The continuous growth message is interrupted.
Rozlytrek does not repair the fusion. It blocks the growth signal the fusion creates.
Why might I be given it? It may be considered when an advanced cancer has an NTRK fusion and other suitable treatments are unavailable or have stopped working.
What makes it relevant to me? Testing must find an NTRK gene fusion in your cancer.
Repotrectinib / Augtyro
A targeted medicine for some advanced cancers with an NTRK gene fusion.
NTRK fusion-matched treatmentHow this medicine works
What is it? A medicine designed to block the abnormal growth signal created by an NTRK fusion.
What does it actually do? Think of an NTRK fusion as incorrectly joined wiring creating a circuit that stays live. The cancer can sometimes rewire parts of that circuit so an earlier TRK medicine no longer fits its target. Augtyro blocks the abnormal TRK signal and is shaped to overcome some of this resistance rewiring.
Augtyro does not repair the fusion. It blocks the signal and may also block some resistance changes.
Why might I be given it? It may be considered when an advanced NTRK-positive cancer cannot be removed by surgery and other suitable treatments are unavailable or have stopped working.
What makes it relevant to me? Testing must find an NTRK gene fusion in your cancer.
Selpercatinib / Retevmo
A targeted medicine for cancers with a rare change called a RET gene fusion.
RET fusion-matched treatmentHow this medicine works
What is it? A medicine designed specifically for cancers being driven by a RET fusion.
What does it actually do? Think of RET as a doorbell that sends a growth message into the cell. A RET fusion can leave the doorbell pressed down and ringing continuously. Retevmo blocks the abnormal RET signal. The continuous growth message is interrupted.
Retevmo does not repair the RET fusion. It interrupts the growth message the fusion creates.
Why might I be given it? It may be considered when an advanced cancer has a RET fusion and other suitable treatment options are limited.
What makes it relevant to me? Testing must find a RET gene fusion in your cancer.
Nivolumab / Opdivo
An immunotherapy medicine that helps stop cancer switching off immune cells that could attack it.
Studied in CCAHow this medicine works
What is it? An immunotherapy medicine that helps the body's immune system keep attacking cancer.
What does it actually do? Think of an immune cell as a security guard. Cancer can press a PD-1 brake that tells the guard to stand down. Opdivo covers that brake, making it harder for the cancer to switch the guard off. The immune cell may then continue its attack.
Opdivo does not attack the cancer directly. It releases a brake that can limit the immune response.
Why might I be given it? Nivolumab has been studied in biliary tract cancer and is used in several other cancers. Whether it is considered in CCA depends on your individual treatment situation.
What makes it relevant to me? Features found in your tumour, previous treatments and whether an appropriate trial or access pathway is available may affect whether nivolumab is worth discussing.
Ipilimumab / Yervoy
An immunotherapy medicine that removes a brake that normally limits how strongly immune cells become activated.
Studied in CCA combinationsHow this medicine works
What is it? An immunotherapy medicine that works on a different immune brake from medicines such as nivolumab and pembrolizumab.
What does it actually do? Think of CTLA-4 as a gate limiting how many immune guards become fully activated. Yervoy blocks this control and opens the activation gate more widely. More immune guards may then become active against the cancer.
Yervoy does not attack the cancer directly. It increases immune activation by releasing a different brake.
Why might I be given it? In CCA it has mainly been studied together with another immunotherapy rather than being used routinely on its own.
What makes it relevant to me? It may become relevant because of your individual cancer, previous treatment or access to a specialist treatment pathway or clinical trial.
Nivolumab + Ipilimumab
Two immunotherapy medicines used together to release two different brakes on the immune system.
Studied in CCA, not standard CCA treatmentHow this treatment works
What is it? Two immunotherapy medicines that remove two different controls that can limit an immune attack on cancer.
What does it actually do? Think of immune cells as security guards controlled by two different safety systems. Nivolumab blocks a stand-down message received by guards already near the cancer. Ipilimumab opens the gate that limits how strongly new guards become activated. Releasing both controls can produce a stronger immune attack than releasing either one alone.
The combination does not attack cancer directly. It releases two different immune controls and can also increase immune-related harm.
Why might I be given it? The combination has produced responses in some people with cholangiocarcinoma and biliary tract cancer, but it is not a routine standard treatment for CCA.
What makes it relevant to me? MSI-H or dMMR can make immunotherapy particularly important, but there is not currently one established CCA biomarker that specifically identifies who will benefit from nivolumab + ipilimumab.
What do we know about how long responses last? Some responses have lasted for a substantial period, but a long-term CCA record showing that responses can remain controlled for 3, 5 or 10 years has not yet been established. Pembrolizumab has a more mature record of prolonged responses in selected biliary tract cancer patients.
Daraxonrasib / Rasonque / RMC-6236
A medicine designed to block growth signals used by cancers with several different KRAS and other RAS mutations.
Emerging for KRAS-mutant CCAHow this medicine works
What is it? A targeted medicine designed to work across several different RAS mutations rather than only one specific KRAS mutation.
What does it actually do? Think of RAS as a growth switch inside the cell. Some KRAS and other RAS mutations can jam the switch on, continually passing a growth message. Daraxonrasib is designed to attach to active RAS proteins and stop them continuing to pass that message.
Daraxonrasib does not repair KRAS. It is designed to block the growth signal—but it remains an emerging treatment, not an established CCA treatment.
Why might I be given it? It is not a standard approved CCA treatment. It may become relevant through research, a clinical trial or another access pathway when a cancer has a suitable RAS mutation.
What makes it relevant to me? If your report says KRAS or another RAS mutation, the exact mutation matters. That exact result helps determine whether this treatment approach may be relevant.
Ursodeoxycholic acid / Ursodiol / UDCA
A bile medicine that can make bile less harsh and help it flow more easily. It is not a medicine that kills or controls cholangiocarcinoma.
Not an anti-cancer CCA treatmentWhy you may hear about it
What is it? A type of bile acid that is also used as a medicine for some liver and bile-duct conditions.
What does it actually do? Think of bile as a strong cleaning liquid made by the liver. If its mixture or flow is abnormal, it can irritate the liver and bile ducts. UDCA becomes part of that mixture, making it less harsh and sometimes helping it flow more easily. This can help protect cells lining the bile ducts from some damaging effects of bile.
UDCA may support bile and liver health. It does not kill, shrink or control cholangiocarcinoma.
Why might I be given it? It may be prescribed to help with a liver or bile-duct condition. It is not chemotherapy, immunotherapy or a targeted treatment for cholangiocarcinoma.
What makes it relevant to me? It may be relevant because of what is happening with your liver, bile ducts or bile flow, not because your cancer has a particular mutation.
Procedures & Treatments Aimed at Tumours
Treatments focused on a tumour or specific area
These treatments act directly on a tumour or area of cancer rather than treating cancer throughout the whole body.
Local therapy
Treatment aimed directly at one tumour or a specific area of cancer.
Locoregional therapy
Treatment aimed at the tumour and the nearby area of the body where the cancer is located.
Ablation
Treatment that destroys a tumour where it is, rather than cutting it out with surgery.
Why this matters
Different forms of ablation destroy tumour tissue in different ways, including heat, freezing, electrical pulses or focused ultrasound.
Radiofrequency ablation (RFA)
A needle-like probe is placed into the tumour and uses electrical energy to create heat that destroys the tumour tissue.
Microwave ablation
A needle-like probe is placed into the tumour and uses microwave energy to rapidly heat and destroy the tumour tissue.
Cryoablation
A probe is placed into the tumour and makes it extremely cold, freezing and destroying the tumour tissue.
NanoKnife / Irreversible Electroporation (IRE)
Thin needles are placed around the tumour and send short electrical pulses through it, damaging the tumour cells so they die.
Why this matters
IRE destroys cells using electrical pulses rather than mainly using heat. This can make it useful in some situations where important blood vessels, bile ducts or other nearby structures need to be protected.
TACE
A thin tube is guided into the artery feeding the tumour, chemotherapy is delivered directly into it, and the blood supply is then partly blocked to keep the treatment concentrated there.
Why this matters
TACE attacks the tumour in two ways: it delivers chemotherapy directly to the tumour and reduces the blood flowing into it.
Y-90 / Radioembolisation
A thin tube is guided into the artery feeding the tumour and releases tiny beads carrying radiation, allowing the radiation to act on the tumour from inside its blood supply.
Why this matters
The radiation is delivered close to the tumour rather than being aimed through the body from outside.
Histotripsy
A non-invasive treatment that focuses ultrasound from outside the body to create tiny bubbles inside the tumour that rapidly expand and collapse, breaking apart the tumour tissue.
Why this matters
Histotripsy destroys tumour tissue mechanically rather than by heating or freezing it, and does not require a needle or probe to be placed into the tumour.
SBRT / SABR
Radiation beams are aimed very precisely at the tumour from different directions, allowing a high dose of radiation to be delivered over only a few treatment sessions.
Why this matters
The beams are planned to concentrate radiation in the tumour while limiting the amount received by nearby healthy tissue.
CyberKnife
A robotic system moves around the body and sends highly focused radiation beams into the tumour from many different angles.
Why this matters
Despite the name, CyberKnife is not surgery and does not use a knife. It is a way of delivering highly precise radiation treatment.
Proton therapy
A type of radiation that uses proton beams which can be planned to release most of their radiation at the tumour and leave less radiation continuing beyond it into healthy tissue.
Why this matters
This can be useful when reducing radiation to healthy tissue behind or around the tumour is particularly important. Whether it offers an advantage depends on the tumour's location and what nearby organs or tissues need to be protected.
Clinical Trials
How trials work and who can take part
These terms explain how clinical trials work and what may determine whether you can take part.
Clinical trial
A research study in people that tests a treatment or treatment approach.
Phase I trial
An early trial that studies how much treatment can be given safely and what effects it has in people.
Why this matters
Phase I does not mean the treatment cannot work. Researchers are still working out how it should be given safely and at what dose.
Phase II trial
A trial that looks more closely at whether a treatment is working and continues to assess its safety.
Phase III trial
A larger trial that compares a treatment with the current standard treatment or another treatment approach.
Eligibility
Whether you meet the requirements to take part in a clinical trial.
Why this matters
Eligibility can depend on your cancer type, previous treatments, test results, general health and specific changes found in the cancer.
Inclusion criteria
The requirements you must meet to be considered for a clinical trial.
Exclusion criteria
Factors that can prevent you from taking part in a clinical trial.
Investigational treatment
A treatment that is still being studied for this cancer or for this particular use.
Study arm
One of the treatment groups within a clinical trial.
Randomisation
A process that assigns participants to different trial groups by chance.
Why this matters
Randomisation helps make the groups as similar as possible so researchers can more reliably compare what happens in each group.
Placebo
A treatment with no active anti-cancer drug that may be used for comparison in some clinical trials.
Why this matters
In cancer trials, a placebo is often given alongside standard treatment rather than instead of an effective treatment that is already available.
Basket trial
A trial that studies one treatment across different cancer types that share the same change or feature.
Why this matters
In a basket trial, a change found in the cancer can be more important than where the cancer first started.
Expanded or compassionate access
A pathway that may allow someone to receive a treatment still being studied without taking part in the clinical trial.
Why this matters
Access is not automatic. It usually depends on the treating doctor, the company developing the treatment, the rules that govern access, and whether the treatment can be supplied.
When Treatment Changes
What it means when the plan needs to change
These terms describe why treatment may be changed, reduced, paused or stopped, and what may happen next.
Progression
The cancer has grown, spread, or new areas of cancer have appeared.
Why this matters
Progression usually means the current treatment plan should be reviewed and the next available options considered.
Treatment resistance
When the cancer no longer responds to a treatment that previously controlled it, or does not respond as expected.
Refractory
A term used when the cancer is not responding to treatment.
Treatment failure
A term used when a treatment has not produced the result it was intended to achieve.
Why this matters
Treatment failure refers to that treatment. It does not necessarily mean there are no other treatment options.
Dose reduction
Giving a lower amount of treatment than originally planned.
Why this matters
A dose may be reduced to manage side effects or make treatment safer to continue. It does not automatically mean the treatment has stopped working.
Treatment discontinued
The current treatment has been stopped.
Why this matters
Treatment may be stopped because the cancer has changed, side effects are too difficult, the planned treatment is complete, or another treatment is considered more appropriate.
Best supportive care (BSC)
Treatment and support focused on controlling symptoms and helping you function and feel as well as possible.
Why this matters
Support for symptoms can be given alongside treatment against the cancer. If your doctor uses the term “best supportive care”, ask whether treatment aimed at controlling the cancer is also continuing or being considered.
Palliative treatment
Treatment given to control the cancer, reduce symptoms or help someone live longer when cure is not currently considered possible.
Why this matters
Palliative treatment can still be active treatment against the cancer. It does not mean treatment has stopped or that you are approaching the end of life.
Palliative care
Specialist support for symptoms, pain and other problems caused by cancer or its treatment.
Why this matters
Palliative care can be provided alongside active cancer treatment. Being referred to palliative care does not automatically mean treatment has stopped or that you are approaching the end of life.
End-of-life care / Hospice
Care provided when someone is approaching the end of life and the focus is on comfort, symptoms and support.
Why this matters
End-of-life care is different from palliative treatment and palliative care. Palliative treatment can still actively treat the cancer, and palliative care can be provided much earlier alongside cancer treatment.
Diagnosis & Cancer Type
Understanding exactly what has been diagnosed
These terms describe what type of cancer has been found, where it started and what the cancer cells look like.
Cholangiocarcinoma (CCA)
Cancer that begins in the bile ducts, the tubes that carry bile from the liver towards the small intestine.
Why this matters
Cholangiocarcinoma can begin in different parts of the bile duct system. Where it begins affects the surgery, procedures and other treatments that may be possible.
Key question to ask: Where exactly in my bile ducts did my cancer begin?
Intrahepatic cholangiocarcinoma (iCCA)
Cholangiocarcinoma that begins in the smaller bile ducts inside the liver.
Why this matters
Because this cancer begins inside the liver, surgery usually involves removing the part of the liver containing the cancer if complete removal is possible.
Perihilar cholangiocarcinoma (pCCA)
Cholangiocarcinoma that begins where the main bile ducts from the right and left sides of the liver meet as they leave the liver.
Why this matters
This area is close to major blood vessels and both sides of the liver. Surgery can therefore involve removing bile ducts, part of the liver and sometimes part of a blood vessel before rebuilding the bile drainage.
Key question to ask: Has my cancer been assessed for surgery by a surgeon experienced in perihilar cholangiocarcinoma?
Distal cholangiocarcinoma (dCCA)
Cholangiocarcinoma that begins in the lower bile duct as it passes towards and through the pancreas before reaching the small intestine.
Why this matters
Because the lower bile duct is closely connected to the pancreas and duodenum, surgery to remove distal cholangiocarcinoma commonly requires a Whipple procedure rather than removal of the bile duct alone.
Extrahepatic cholangiocarcinoma
A general term for cholangiocarcinoma that begins in the bile ducts outside the liver. It includes perihilar and distal cholangiocarcinoma.
Why this matters
“Extrahepatic” does not tell you exactly where outside the liver the cancer began. Knowing whether it is perihilar or distal gives you more useful information about the surgery and treatment options that may apply.
Key question to ask: Is my extrahepatic cholangiocarcinoma perihilar or distal?
Adenocarcinoma
A cancer that begins in cells that line organs and can produce fluids or other substances. Most cholangiocarcinomas are adenocarcinomas.
Primary cancer / Primary site
The place in the body where the cancer first began.
Why this matters
Cancer is named and treated according to where it started, even if it later spreads somewhere else. Cholangiocarcinoma that spreads to the lung, for example, is still cholangiocarcinoma, not lung cancer.
Malignant
Cancerous. A malignant tumour can grow into nearby tissue and may spread to other parts of the body.
Benign
Not cancerous. A benign growth does not spread to distant parts of the body.
Differentiation
How similar or different the cancer cells look compared with normal cells when examined under a microscope.
Why this matters
Well-differentiated cancer cells look more like normal cells. Poorly differentiated cancer cells look much less like normal cells and often behave more aggressively. Moderately differentiated sits between the two.
Tumour grade
A description based on how abnormal the cancer cells look under a microscope and how they are expected to behave.
Why this matters
Grade and stage are not the same thing. Grade describes what the cancer cells look like. Stage describes how far the cancer has grown or spread.
Staging & Spread
Understanding how far the cancer has grown or spread
These terms describe the size and location of the cancer, whether nearby lymph nodes are involved and whether it has spread to another part of the body.
Cancer stage
A way of describing how much cancer is present and how far it has grown or spread.
Why this matters
Stage helps doctors describe the extent of the cancer, but it does not by itself tell you every treatment option that may be possible.
Key question to ask: What specifically makes my cancer this stage?
TNM staging
A staging system that describes the main tumour, nearby lymph nodes and whether the cancer has spread to a distant part of the body.
Why this matters
TNM breaks the stage into three separate pieces of information: T describes the main tumour, N describes nearby lymph nodes and M describes distant spread.
T stage
Describes the main tumour and how far it has grown into nearby tissue or structures.
Why this matters
A higher T stage generally means the tumour has grown further locally, but what the T number means depends on where the cholangiocarcinoma began.
N stage
Describes whether cancer has been found in nearby lymph nodes.
Why this matters
Lymph node involvement can affect the overall stage, expected risk of recurrence and treatment planning.
M stage
Describes whether the cancer has spread to a distant part of the body.
Why this matters
M0 means no distant spread has been identified. M1 means distant spread has been identified.
Localised disease
Cancer that remains in the area where it started and has not been found in distant parts of the body.
Why this matters
Localised disease may offer more treatment options, including surgery in some patients, but localised does not automatically mean the cancer is removable.
Locally advanced
Cancer that has grown into nearby tissue, organs or blood vessels but has not necessarily spread to a distant part of the body.
Why this matters
Locally advanced does not automatically mean surgery will never be possible. The exact structures involved, the experience of the surgical team and how the cancer responds to treatment can all affect what becomes possible.
Key question to ask: What exactly is preventing surgery, and could that barrier change?
Regional disease
Cancer that has spread beyond where it started into nearby tissue or nearby lymph nodes, but not to a distant part of the body.
Lymph node involvement
Cancer cells have been found in one or more lymph nodes.
Why this matters
Which lymph nodes are involved matters. Nearby lymph nodes and distant lymph nodes can have different effects on staging and treatment decisions.
Key question to ask: Which lymph nodes are involved, and are they considered nearby or distant?
Metastasis / Metastatic disease
Cancer that has spread from where it started to another part of the body.
Why this matters
A cholangiocarcinoma that spreads to another organ remains cholangiocarcinoma. For example, cholangiocarcinoma in the lung is not a new lung cancer.
Distant metastasis
Cancer that has spread to an organ, tissue or lymph node away from where the cancer first began.
Why this matters
Distant metastasis usually changes the overall stage and treatment approach, but the number, location and biology of the metastatic sites can still matter when treatment options are considered.
Oligometastatic disease
Metastatic cancer where only a small number of areas of spread can be identified.
Why this matters
In selected patients, having only a small number of metastatic sites may allow treatments aimed directly at those individual tumours to be considered alongside treatment for the whole body.
Key question to ask: Is the number and location of my metastatic sites limited enough for treatments aimed directly at them to be considered?
Recurrent disease
Cancer that has returned after treatment or after a period when it could not be detected.
Why this matters
Where the cancer has returned matters. A recurrence may be near the original cancer, elsewhere in the body, or both, and this can affect what treatment options remain available.
Scans & Imaging
Understanding what scans are looking for
These terms describe the scans used to see the cancer, where it is located, whether it has changed and whether it may have spread.
CT scan
A scan that uses X-rays to create detailed pictures of the inside of the body from many different angles.
Why this matters
CT scans are commonly used to show the size and location of the cancer, its relationship to nearby organs and blood vessels, and whether there are signs of spread elsewhere.
MRI scan
A scan that uses a strong magnetic field and radio waves to create detailed images of organs and soft tissue.
Why this matters
MRI can give particularly detailed information about the liver, bile ducts and nearby blood vessels, which can help with treatment and surgical planning.
MRCP
A special type of MRI that creates detailed pictures of the bile ducts, gallbladder and pancreatic duct without placing an instrument inside them.
Why this matters
MRCP can help show where a bile duct is narrowed or blocked and how far an abnormal area may extend along the bile duct system.
PET scan / PET-CT
A scan that uses a small amount of radioactive tracer to show areas of the body using more of that tracer than surrounding tissue.
Why this matters
Some cancers take up more tracer and appear more active on PET imaging. PET can sometimes help identify areas of cancer that may not be obvious on another scan.
Not every cholangiocarcinoma shows strongly on PET, so a PET result is interpreted together with other scans and clinical information.
Ultrasound
A scan that uses sound waves to create pictures of organs and structures inside the body.
Why this matters
Ultrasound can show changes such as widened bile ducts, liver abnormalities or fluid in the abdomen and is often one of the first scans used when investigating symptoms.
Contrast
A substance given before or during some scans to make blood vessels, organs and abnormal tissue easier to see.
Why this matters
How a tumour looks before and after contrast is given can provide information about its blood supply and help distinguish it from surrounding tissue.
Lesion
An area of tissue that looks different from the surrounding tissue on a scan or other test.
Why this matters
A lesion is not automatically cancer. The scan appearance, location, change over time and sometimes biopsy are used to work out what it is.
Mass
An abnormal area or lump of tissue seen on a scan or examination.
Why this matters
The word “mass” describes what has been seen. It does not by itself confirm what the tissue is or whether it is cancer.
Enhancement
A change in how tissue appears on a scan after contrast has been given.
Why this matters
Different tissues and tumours take up and release contrast in different ways. These patterns can help radiologists work out what an abnormal area may be.
Uptake
The amount of a tracer that collects in an area of the body during a scan such as PET.
Why this matters
Higher uptake can occur in cancer, but it can also occur with inflammation, infection and some normal tissues. Uptake therefore needs to be interpreted in context.
Radiologist
A specialist doctor who interprets medical images such as CT, MRI, ultrasound and PET scans.
Why this matters
The radiologist's report describes what is visible on the scan, but treatment decisions usually combine that information with pathology, blood tests, clinical assessment and specialist review.
Radiology report
The written interpretation of a scan prepared by the radiologist.
Why this matters
The report usually describes what was seen and ends with a short summary or conclusion. Keeping copies of your reports makes it easier to compare changes over time and obtain another specialist opinion.
Measurable disease
Cancer that can be measured clearly enough on a scan to track whether it becomes larger or smaller over time.
Why this matters
Measurable disease may be used to judge treatment response and can also be a requirement for some clinical trials.
Pathology & Biopsy
Understanding what the tissue sample tells you
These terms describe how tissue is collected, examined and used to confirm the diagnosis and guide further testing.
Biopsy
A procedure that removes cells or tissue from an abnormal area so they can be examined for cancer.
Why this matters
A biopsy can confirm what type of cancer is present and may also provide tissue for molecular and biomarker testing.
Key question to ask: Is there enough tissue to confirm the diagnosis and complete all recommended testing?
Pathology
The examination of cells and tissue to identify what disease is present and what the cells look like.
Why this matters
Pathology is one of the main ways the diagnosis of cholangiocarcinoma is confirmed and can provide information about the type and characteristics of the cancer.
Pathologist
A specialist doctor who examines cells and tissue to help diagnose cancer and describe its features.
Pathology report
The written report describing what the pathologist found in the tissue or cells that were examined.
Why this matters
The report may confirm the cancer type and include information such as differentiation, lymph node involvement, surgical margins and other findings that can influence treatment.
Key question to ask: Can I have a complete copy of my pathology report?
Histology
What the tissue and cancer cells look like when examined under a microscope.
Why this matters
Histology helps determine what type of cancer is present and can help distinguish cholangiocarcinoma from cancers that began somewhere else.
Cytology
The examination of individual cells or small groups of cells under a microscope.
Why this matters
Cytology may use cells collected from bile duct brushings or fluid. It can help identify cancer, but it usually provides less tissue than a core biopsy.
Core biopsy
A biopsy that uses a hollow needle to remove a small cylinder of tissue from the abnormal area.
Why this matters
A core biopsy usually provides more tissue than a sample containing only individual cells. That can be important when tissue is needed for both diagnosis and molecular testing.
Key question to ask: Will this biopsy provide enough tissue for molecular profiling as well as diagnosis?
Fine needle aspiration (FNA)
A thin needle is placed into an abnormal area to remove cells or fluid for examination.
Why this matters
FNA can help diagnose cancer, but because it usually collects fewer cells and less tissue than a core biopsy, it may not always provide enough material for every additional test.
Key question to ask: If molecular testing may be needed, will an FNA provide enough material?
Bile duct brushing
A small brush is passed through the bile duct to collect cells from an abnormal or narrowed area.
Why this matters
The collected cells can be examined for cancer. A brushing may sometimes be inconclusive because only a small number of abnormal cells are collected.
Specimen
The cells, tissue, fluid or organ material collected during a biopsy, procedure or operation and sent for testing.
Tissue block
A preserved piece of tissue kept by the pathology laboratory so thin sections can be cut from it for further testing.
Why this matters
Stored tissue may be used later for molecular profiling, biomarker testing, another pathology review or eligibility testing for a clinical trial.
Key question to ask: Where is my tumour tissue stored, and how much remains available for further testing?
Insufficient tissue / Inadequate sample
The sample does not contain enough suitable cancer cells or tissue to complete the test that was requested.
Why this matters
An insufficient sample does not mean the test itself is unnecessary. It means the laboratory did not have enough suitable material to complete it.
Key question to ask: Is there another stored tissue sample available, or can another safe way of obtaining enough tissue be assessed?
Positive result
The test found the abnormality it was looking for, such as cancer cells or a particular biomarker.
Why this matters
“Positive” does not automatically mean good or bad. It simply means the specific thing being tested for was found.
Negative result
The test did not find the abnormality it was looking for in the sample that was tested.
Why this matters
A negative biopsy does not always prove that cancer is absent. Sometimes the sample may not contain the part of the abnormal area where cancer cells are present.
Key question to ask: Does this negative result confidently exclude cancer, or could the sample have missed it?
Inconclusive / Indeterminate
The sample does not provide enough certainty to say clearly whether cancer is present or absent.
Why this matters
An inconclusive result is not the same as a negative result. Further testing, another sample or specialist pathology review may be needed.
Key question to ask: What is the next step to obtain a definite answer?
Pathology review / Second pathology opinion
Another pathologist reviews the original tissue, slides or reports to confirm or clarify the diagnosis.
Why this matters
Cholangiocarcinoma can sometimes be difficult to distinguish from other cancers or abnormalities. Specialist review can be useful when the diagnosis is uncertain or when major treatment decisions depend on it.
Blood Tests & Tumour Markers
Understanding what your blood tests are showing
These terms describe blood tests used to assess liver and bile duct function, monitor changes over time and sometimes provide additional information about the cancer.
Liver function tests (LFTs)
A group of blood tests that measure substances linked to the liver and bile ducts.
Why this matters
These results can help show whether bile is flowing normally, whether the liver is under stress and how the liver is coping before, during or after treatment.
Bilirubin
A yellow substance normally processed by the liver and carried out of the body through bile.
Why this matters
Bilirubin can rise when bile cannot drain properly, when the liver is not processing it normally, or for other reasons. A high level can cause yellowing of the skin and eyes.
Key question to ask: If my bilirubin is high, is this being caused by a bile duct blockage, liver function, or something else?
ALP / Alkaline phosphatase
An enzyme found in several parts of the body, including the liver and bile ducts.
Why this matters
ALP often rises when bile flow is obstructed or the bile ducts are irritated, although it can also rise for other reasons.
GGT
An enzyme found mainly in the liver and bile ducts that can rise when the liver or bile ducts are under stress.
Why this matters
GGT is often interpreted together with ALP and other liver tests to help understand whether an abnormal result may be related to the liver or bile ducts.
ALT
An enzyme found mainly inside liver cells that can rise in the blood when liver cells are irritated or damaged.
AST
An enzyme found in the liver and other tissues that can rise when cells are injured.
Why this matters
Because AST is also found outside the liver, it is usually interpreted together with ALT and other blood results rather than on its own.
Albumin
A protein made mainly by the liver that helps keep fluid inside blood vessels and carries substances through the blood.
Why this matters
Low albumin can occur when the liver is not making enough protein, with inflammation, poor nutrition or other illness. It can also contribute to fluid collecting in the body.
INR
A blood test that measures how long it takes the blood to clot.
Why this matters
The liver makes several proteins needed for normal blood clotting. An abnormal INR can therefore sometimes provide information about how well the liver is functioning, although medicines and other conditions can also affect it.
CA 19-9
A substance that can be measured in the blood and may be elevated in some people with cholangiocarcinoma.
Why this matters
CA 19-9 can sometimes help track changes over time, but it cannot diagnose cholangiocarcinoma by itself. It can also rise because of bile duct blockage, inflammation or infection.
Some people do not naturally produce CA 19-9, so their level may remain low even when cancer is present.
Key question to ask: Is my CA 19-9 being interpreted alongside my bile drainage, scans and other results?
CEA
A substance that can be measured in the blood and may be elevated in some cancers, including some cholangiocarcinomas.
Why this matters
CEA is not specific to cholangiocarcinoma and cannot diagnose the cancer by itself. In some patients, changes over time may provide additional information when interpreted with scans and other tests.
Tumour marker
A substance measured in blood, tissue or another body fluid that may provide information about a cancer.
Why this matters
Tumour markers are usually one piece of evidence. They are interpreted alongside scans, pathology, symptoms and other tests rather than being used alone to decide whether cancer is present or changing.
Trend
The pattern formed when the same blood test is measured repeatedly over time.
Why this matters
A single result is only one point in time. Whether a result is rising, falling or remaining stable can sometimes be more useful than one isolated number.
Reference range
The range of results a laboratory uses as a guide for what is commonly found in people without that particular abnormality.
Why this matters
A result outside the reference range does not automatically mean the cancer is worsening, and a result inside the range does not automatically mean everything is normal. The result has to be interpreted in context.
