Bile duct cancer (cholangiocarcinoma)

Symptoms of bile duct cancer include jaundice, losing weight, feeling tired, having a high temperature, feeling or being sick, and tummy pain.

Anyone can get bile duct cancer. You may be more likely to get it if you are over 65 or have a medical condition, such as liver cirrhosis.

Bile duct cancer can be diagnosed using tests such as blood tests, different types of scans, or by collecting a sample of cells from the bile ducts.

Treatment for bile duct cancer depends on your situation. It may include surgery, chemotherapy radiotherapy, targeted medicines and immunotherapy.

You and your loved ones will be supported throughout your treatment by a group of specialists.

The clinical nurse specialist, or another member of your specialist team will be able to give you information on local support services that you may find helpful.

There are also national cancer charities that offer support and information about bile duct cancer.

AMMF: The Cholangiocarcinoma Charity

Information and support for anyone affected by cholangiocarcinoma (bile duct cancer).

• Website: www.ammf.org.uk
• Email: info@ammf.org.uk
• AMMF: patient resources
• AMMF: forum

Macmillan Cancer Support

Information and support for anyone affected by cancer.

• Website: www.macmillan.org.uk
• Helpline: 0808 808 00 00
• Macmillan Cancer Support: support line service
• Macmillan Cancer Support: online community
• Macmillan Cancer Support: find local support services

Cancer Research UK

Information and support for anyone affected by cancer.

• Website: www.cancerresearchuk.org
• Nurse helpline: 0808 800 4040
• Cancer Research UK: ask a nurse service
• Cancer Research UK: online cancer chat forum
• Cancer Research UK: find a clinical trial service

Maggie's

Practical, emotional and social support for anyone affected by cancer.

• Website: www.maggies.org
• Helpline: 0300 123 1801
• Maggie's centres
• Maggie's support groups

Marie Curie

Care and support for anyone affected by a terminal illness.

• Website: www.mariecurie.org.uk
• Helpline: 0800 090 2309
• Marie Curie: support services

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

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, cold or shivery

Other symptoms can affect your tummy, such as:

• feeling or being sick
• pain in your tummy

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

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.

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.