Bile duct cancer (cholangiocarcinoma)

 Find out about bile duct cancer, including what the symptoms are, what causes it, how it's diagnosed and treated, and where to get further support. 

 What is bile duct cancer (cholangiocarcinoma)? 

• Bile duct cancer, also called cholangiocarcinoma, is a cancer that's found anywhere in the bile ducts.
• The bile ducts are small tubes that connect different organs, including the liver and gall bladder. They are part of the digestive system.
• How serious bile duct cancer is depends on where it is in the bile ducts, how big it is, if it has spread and your general health.

 Symptoms of bile duct cancer (cholangiocarcinoma) 

Main symptoms of bile duct cancer

Bile duct cancer may not have any symptoms, or they can be hard to spot.

Symptoms of bile duct cancer can include:

• the whites of your eyes turning yellow or your skin turning yellow, which may be less obvious on brown or black skin (jaundice)
• itchy skin
• darker pee and paler poo than usual
• loss of appetite or losing weight without trying to
• feeling generally unwell
• feeling tired or having no energy
• a high temperature, or you feel hot or shivery

Other symptoms can affect your tummy, such as:

• feeling or being sick
• pain in your tummy

 See a GP if you have: 

• lost a noticeable amount of weight
• symptoms of bile duct cancer that are not getting better

 Important 

Many of these symptoms are very common and can be caused by different conditions.

Having them does not definitely mean you have bile duct cancer. But it's important to get them checked by a GP.

This is because if they're caused by cancer, finding it early may mean it's easier to treat.

What happens at the GP appointment

The GP may feel your tummy.

They may ask you to have a blood test.

Referral to a specialist

You may get an urgent referral for more tests or to see a specialist in hospital if the GP thinks you have symptoms that could be cancer. This does not definitely mean you have cancer.

 Causes of bile duct cancer (cholangiocarcinoma) 

Who is more likely to get bile duct cancer

Anyone can get bile duct cancer. It's not always clear what causes it.

You might be more likely to get it if you:

• are over the age of 65
• have certain medical conditions, such as abnormal bile ducts, long term swelling in the bowel (ulcerative colitis) or bile ducts, a parasite in the liver (liver flukes), bile duct stones and liver cirrhosis

It's important to get any symptoms of bile duct cancer checked by a GP.

Anyone can get bile duct cancer, even if you do not think you have a higher chance of getting it.

 Tests and next steps for bile duct cancer (cholangiocarcinoma) 

Tests for bile duct cancer

You will need more tests and scans to check for bile duct cancer if the GP refers you to a specialist.

These tests can include:

• blood tests
• scans, like an ultrasound scan (sometimes from inside your body using an endoscope), CT scan, or MRI scan
• collecting a small sample of cells from the bile ducts (a biopsy) to be checked for cancer
• a test called an endoscopic retrograde cholangio pancreatography (ERCP)
• a special kind of X-ray called percutaneous transhepatic cholangiography (PTC)

You may not have all these tests.

These tests can also help find problems in other nearby organs, such as your pancreas, gallbladder or liver.

Getting your results

It can take several weeks to get the results of your tests.

Try not to worry if your results are taking a long time to get to you. It does not definitely mean anything is wrong.

You can call the hospital or GP if you are worried. They should be able to update you.

A specialist will explain what the results mean and what will happen next. You may want to bring someone with you for support.

If you're told you have bile duct cancer

Being told you have bile duct cancer can feel overwhelming. You may be feeling anxious about what will happen next.

It can help to bring someone with you to any appointments you have.

A group of specialists will look after you throughout your diagnosis, treatment and beyond.

Your team will include a clinical nurse specialist who will be your main point of contact during and after treatment.

You can ask them any questions you have.

Next steps

If you've been told you have bile duct cancer, you may need more tests.

These, along with the tests you've had already, will help the specialists find out the size of the cancer and how far it's spread (called the stage).

You may need:

• a PET scan, sometimes with a CT scan (PET-CT)
• a small operation to look inside your tummy, called a laparoscopy

The specialists will use the results of these tests and work with you to decide on the best treatment plan for you.

 Treatment for bile duct cancer (cholangiocarcinoma) 

Treatment for bile duct cancer

Bile duct cancer is often treatable. But it can be difficult to treat.

The treatment you have will depend on:

• the size and type of bile duct cancer you have
• where it is
• if it has spread
• your general health

It may include surgery, chemotherapy, radiotherapy, targeted medicines and immunotherapy.

The specialist care team looking after you will:

• explain the treatments, benefits and side effects
• work with you to create a treatment plan that is best for you
• help you manage any side effects, including changes to your diet to help with your digestion

You'll have regular check-ups during and after any treatments. You may also have tests and scans.

If you have any symptoms or side effects that you are worried about, talk to your specialists. You do not need to wait for your next check-up.

Surgery

Your treatment will depend on if the cancer can be removed or not.

Surgery to remove bile duct cancer

If bile duct cancer is found early and it has not spread, you should be able to have surgery to remove it.

This will usually involve removing all or parts of the bile duct, as well as parts of other organs or lymph nodes around it. Lymph nodes are part of your body's immune system.

Surgery to help control symptoms of bile duct cancer

If the cancer has spread too far and cannot be removed, you may have surgery to help control some symptoms of bile duct cancer.

This can include surgery to:

• unblock the bile duct or stop it getting blocked, which helps with jaundice
• unblock the first part of the small intestine or stop it getting blocked, which helps with feeling or being sick
• bypass a blockage in the bile duct or small intestine, which helps with jaundice and feeling or being sick

The aim of these operations is to help improve your symptoms and help you live longer, not to cure the cancer.

Chemotherapy

Chemotherapy uses medicines to kill cancer cells.

You may have chemotherapy for bile duct cancer:

• after surgery to get rid of any remaining cancer and help stop the cancer coming back
• to help make the cancer smaller, and control and improve the symptoms if you are not able to have surgery
• with radiotherapy (chemoradiotherapy) or with targeted medicines or immunotherapy

Targeted medicines and immunotherapy

Targeted medicines kill cancer cells.

Immunotherapy is where medicines are used to help your immune system kill cancer.

You may have immunotherapy if the cancer has spread to another part of your body.

You may have targeted medicines or immunotherapy either on their own or with chemotherapy.

Radiotherapy

Radiotherapy uses high-energy rays of radiation to kill cancer cells.

Radiotherapy is not often used to treat bile duct cancer. But you may have radiotherapy:

• after surgery to help stop the cancer coming back
• to help control and improve the symptoms of advanced cancer
• with chemotherapy (chemoradiotherapy)

What happens if you've been told your cancer cannot be cured

If you have advanced bile duct cancer it might be very hard to treat. It may not be possible to cure the cancer.

If this is the case, the aim of your treatment will be to limit the cancer and its symptoms, and help you live longer.

Finding out the cancer cannot be cured can be very hard news to take in.

You will be referred to a special team of doctors and nurses called the palliative care team or symptom control team.

They will work with you to help manage your symptoms and make you feel more comfortable.

The clinical nurse specialist or palliative care team can also help you and your loved ones get any support you need.