Bile duct cancer (cholangiocarcinoma)

What causes bile duct cancer?

Doctors don’t know the exact causes of bile duct cancer. But there are risk factors that can increase your chance of developing it.

Read more about the causes and risk factors of bile duct cancer.

Diagnosing bile duct cancer

If you have symptoms, you’ll usually start by seeing your GP. They’ll examine you and they may do some blood tests. They may arrange some further tests and refer you to a specialist at the hospital.

At the hospital, you may see a liver specialist (hepatologist). Or you may see a doctor who specialises in treating conditions of the stomach and bowel (gastroenterologist).

The doctor will ask you about your symptoms and any previous medical problems. They’ll also examine you and take blood samples. This is to check:

• your general health
• how well your liver is working

There are many different tests for bile duct cancer. Some of these are described here. You may have one or more of them.

Ultrasound scan

An external ultrasound scan uses sound waves to build up a picture of the bile ducts and surrounding organs.

CT scan

A CT scan takes a series of X-rays which build up a three-dimensional (3D) picture of the inside of your body.

MRI scan

An MRI scan uses magnetism to build up a detailed picture of areas of your body.

MRCP (magnetic resonance cholangiopancreatography)

An MRCP is a type of MRI scan that looks at the bile ducts and nearby organs. Your doctor can tell you more about this test.

ERCP (endoscopic retrograde cholangio-pancreatography)

An ERCP allows the doctor to look at the bile ducts, gallbladder and pancreas. The doctor can take samples of tissue (biopsies) during an ERCP. They can also treat a blockage in the bile ducts to help with jaundice.

EUS (endoscopic ultrasound scan)

An EUS is similar to an ERCP but uses ultrasound. It may also be used to take biopsies.

PTC (percutaneous transhepatic cholangiography)

A PTC is a test that uses X-ray to look at the bile ducts. It can also be used to unblock a bile duct and help with jaundice.

Waiting for test results can be a difficult time. Macmillan Cancer Support have information that can help.

Tests on the cancer cells

If possible, the doctors will take a sample of the cancer cells. This is called a biopsy. They may do this during a test like an ERCP or EUS. A biopsy can help confirm a diagnosis.

The cancer cells can also be tested in a laboratory. This is to see whether there are any changes to certain genes. This is called molecular testing.

If the cancer cells have a change in a particular gene, you may be offered a drug that targets this. This is called precision medicine.

Macmillan Cancer Support have more information about genes and cancer treatment.

The charity AMMF has information about bile duct cancer and molecular testing.

Staging and grading of bile duct cancer

The results of your tests help your doctors find out more about the size and position of the cancer and whether it has spread. This is called staging.

A doctor decides the grade of the cancer by how the cancer cells look under the microscope. This gives an idea of how quickly the cancer might grow or spread.

Knowing the stage and grade helps your doctors plan the best treatment for you.

Macmillan Cancer Support have information about staging and grading for bile duct cancer.

Treatment for bile duct cancer

A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT). As bile duct cancer is a hepatobiliary cancer, you’ll usually be seen by a MDT who looks after these types of cancers.

After the MDT meeting, you’ll usually meet with your specialist doctor and nurse. They’ll talk to you about your treatment plan.

The treatment you have depends on:

• the type of bile duct cancer you have
• the size of the cancer
• whether the cancer has spread to other areas of the body
• your general health
• your preferences

Your specialist doctor should explain:

• the aim of the treatment – whether it’s to cure the cancer or control it
• the benefits of the treatment
• the disadvantages of the treatment – like the risks and side effects
• any other treatments that may be available
• what may happen if you don’t have the treatment

Your doctor or cancer specialist or nurse will explain the different treatments and their side effects. They’ll also talk to you about things to consider when making treatment decisions. Make sure you have a contact number so you know who to call if you have further questions.

Resectable or unresectable tumours

When planning treatment for bile duct cancer, doctors may use the terms resectable and unresectable.

Resectable tumours are ones that doctors think may be possible to remove with surgery. Early-stage cancers (stage 1 or 2) are often resectable. Some stage 3 cancers may also be resectable.

Unresectable tumours can’t be removed with surgery. This might be because the cancer has spread to parts of the body far from the bile ducts. Or it may be because the cancer is affecting structures that can’t be removed, like important blood vessels. Unresectable tumours include some stage 3 cancers and stage 4 cancers.

When deciding whether a cancer can be removed safely (is resectable), the doctor needs to consider the position of the cancer and your general health.

Treatment options for bile duct cancer

Some people may be offered treatment to try to cure the cancer. But this is only possible in a small number of people.

If it’s not possible to cure the cancer, you can have treatment to control the growth and help with symptoms. There are different treatments that can be used.

Your cancer doctor or nurse will talk to you about your treatment options:

Surgery

Some people can have surgery to remove the cancer. It can be used to try and cure the cancer.

Sometimes surgery is used to relieve symptoms caused by the cancer blocking the bowel or bile ducts.

Treating a blocked bile duct

Bile duct cancer often blocks the bile ducts. This can cause jaundice (yellowing of the skin and eyes).

Doctors usually treat it by putting a tube called a stent into the blocked bile duct.

Treating a blocked small bowel

Sometimes a part of the small bowel called the duodenum can get blocked. Usually, the stomach empties into the duodenum. So a blockage can cause sickness (vomiting). Putting a stent into the blockage can help. It allows food to pass through and helps with sickness.The doctor puts the stent in with a long, flexible tube that has a camera on the end (an endoscope). If a stent can’t be put in, you may be offered an operation to bypass the blockage. The surgeon joins the stomach to the next section of small bowel (the jejunum), avoiding the blocked bit of small bowel.

Chemotherapy

You’ll usually have chemotherapy after surgery. This is to help reduce the risk of the cancer coming back.

If surgery isn’t possible, you may be offered chemotherapy to shrink the cancer or slow its growth.

Radiotherapy

You may have radiotherapy on its own or with chemotherapy to reduce the risk of cancer coming back after surgery.

Stereotactic ablative radiotherapy (SABR) may be used if the cancer has not spread outside of the liver.

Sometimes radiotherapy is used to treat symptoms caused by bile duct cancer.

Targeted therapy

Targeted therapy drugs target something in or around the cancer cell that’s helping it grow and survive. They may be used to treat locally advanced or advanced bile duct cancer.

Immunotherapy

Immunotherapy drugs use the immune system to find and attack cancer cells. Immunotherapy may be used to treat bile duct cancer that:

• isn’t suitable for surgery (unresectable)
• has spread to other parts of the body

You may have some treatments as part of a clinical trial.

After bile duct cancer treatment

You’ll have regular check-ups during and after your treatment. Tell your doctor or specialist nurse as soon as possible if you have any problems or notice new symptoms between appointments.

Macmillan Cancer Support have more about follow-up care after treatment.

Getting support

People often have many different feelings when they finish kidney cancer treatment. You may feel relieved that treatment has finished, but worried about what will happen in the future.

It’s important to know where to get support or information from if you need it. People often need support even some time after kidney cancer treatment. But it can be difficult to know who to ask for help.

Ask your GP or someone from your cancer team for advice about support in your area.

Macmillan Cancer Support also has further information to support you. You can:

• phone the Macmillan Support Line on 0808 808 00 00
• chat to Macmillan specialists online
• use the Macmillan bile duct cancer forum – you can talk to others affected by bile duct cancer, ask questions and share your experience

A UK based charity called AMMF also support people with bile duct cancer.

Hope Programme

The HOPE programme is a free 6 session self-management course. It’s designed to help you develop techniques and strategies when living with or after cancer.

Topics include goal setting, fatigue management, and wellbeing.

Even if your lifestyle is already healthy, you may still choose to make some positive changes after treatment. Small steps, like eating well and staying active, can support your overall health and wellbeing, and help your body recover.