Bile duct cancer (cholangiocarcinoma): symptoms, causes, tests and treatment

The NHS says bile duct cancer may not have any symptoms, or they can be hard to spot. It lists the whites of your eyes or your skin turning yellow (jaundice), which may be less obvious on brown or black skin, 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, and a high temperature or feeling hot, cold or shivery. Other symptoms can affect your tummy, such as feeling or being sick and pain in your tummy.

Cancer Research UK explains that the symptoms depend on where the cancer is. Cancers in the bile ducts outside the liver, or those that block the drainage of bile from the liver, can cause jaundice. Cancers that start in the ducts inside the liver (intrahepatic) might make you feel generally unwell but often do not cause specific symptoms until they are more advanced, when weight loss and tummy pain can occur.

It says pain is usually on the right-hand side just below your ribs, and that this type of pain can be caused by other less serious conditions, such as gallstones. Unexplained weight loss is defined as losing between 5% and 10% of your body weight for no obvious reason.

• Yellow skin or eyes (jaundice), with itching.

• Darker pee and paler poo than usual.

• Weight loss and loss of appetite without trying.

• Tummy pain, usually on the right just below the ribs.

• Fever, tiredness, feeling or being sick.

The NHS says to ask for an urgent GP appointment or get help from 111 now if your skin or the whites of your eyes turn yellow, you are being sick for more than 2 days, or you have symptoms that you are worried about but are not sure where to get help. It says to see a GP if you have lost a noticeable amount of weight or have symptoms of bile duct cancer that are not getting better.

It stresses that many of these symptoms are very common and can be caused by different conditions, and that having them does not definitely mean you have bile duct cancer, but that if they are caused by cancer, finding it early may mean it is easier to treat. The GP may feel your tummy and ask you to have a blood test, and may refer you urgently, which does not definitely mean you have cancer.

Cancer Research UK says there are many other conditions that cause these symptoms, most of which are much more common than bile duct cancer.

Cancer Research UK describes bile duct cancer (cholangiocarcinoma) as abnormal cells in the bile ducts dividing in an uncontrolled way. Bile is a fluid made by the liver that helps digest fat, and the bile ducts are tubes that carry it from the liver towards the bowel.

It says there are 3 main types: intrahepatic bile duct cancer, which starts in the liver, and perihilar and distal bile duct cancers, which start in the bile ducts outside the liver. The NHS says it is often treatable but can be difficult to treat.

Cancer Research UK says that in most cases we do not know what causes bile duct cancer, but there are some things that increase the risk. These include getting older (most people are aged 65 and over, though it can develop at any age) and conditions causing long-term inflammation of the bile ducts. It stresses that bile duct cancer is rare, so the risk of developing it is still small.

Risk factors it lists are primary sclerosing cholangitis, liver flukes (not usually a cause in the UK), choledochal cysts, bile duct stones and gallstones, liver cirrhosis from causes such as long-term hepatitis B or C infection, long-term alcohol drinking and non-alcoholic fatty liver disease, inflammatory bowel disease such as ulcerative colitis, exposure to plutonium and past exposure to Thorotrast.

It says there is not enough evidence to be sure about some other factors, including hepatitis B or C infection, diabetes, alcohol, smoking, high blood pressure, being overweight, taking anabolic steroids and chewing betel quid.

The NHS says that if the GP thinks you have symptoms that could be cancer you may get an urgent referral for more tests or to see a specialist in hospital. The GP may feel your tummy and ask you to have a blood test.

Which tests you need depends on your symptoms and your specialist team will explain them. The type and stage of the cancer, and whether it has spread, guide treatment, which the NHS says depends on the size and type of the cancer, where it is, whether it has spread and your general health.

The NHS says treatment depends on the size and type of bile duct cancer, where it is, whether it has spread and your general health. It may include surgery, chemotherapy, radiotherapy, targeted medicines and immunotherapy. The specialist team will explain the treatments, benefits and side effects, and help you manage side effects, including changes to your diet to help with digestion.

If bile duct cancer is found early and has not spread, the NHS says you should be able to have surgery to remove it, which usually involves removing all or parts of the bile duct as well as parts of other organs or lymph nodes around it. If the cancer cannot be removed, surgery may help control symptoms such as jaundice and feeling or being sick, by unblocking or bypassing a blockage.

Cancer Research UK says a stent, a small tube, may be put into the bile duct to relieve a blockage that causes jaundice. Chemotherapy may be given after surgery to get rid of any remaining cancer, or to help control the cancer if it has spread. Radiotherapy is not often used but may help control symptoms or be used after surgery.

The NHS says that if you have advanced bile duct cancer it might be very hard to treat, and it may not be possible to cure it. In that case the aim of treatment is to limit the cancer and its symptoms and help you live longer, and a palliative care or symptom control team will help manage symptoms and make you more comfortable.

Cancer Research UK says survival depends on different factors, no one can tell you exactly how long you will live, and because this cancer is rare some statistics are based on small numbers of people. It says there are no UK-wide statistics by stage, and that the figures it gives come from the United States (people diagnosed between 2012 and 2018), so they might not be a true picture of survival in the UK.

The American figures split the cancer into localised, regional and distant disease. For intrahepatic bile duct cancer, almost 25 out of 100 people with localised disease survive 5 years or more; for extrahepatic, almost 20 out of 100 with localised disease. These numbers describe groups of people, not what will happen to you, and your specialist can talk through your own outlook.

Cancer Research UK says there are many other conditions that cause the same symptoms, most of which are much more common than bile duct cancer. The NHS gallstones page lists gallstone complications such as inflammation of the gallbladder or pancreas and jaundice as reasons for urgent care.

The NHS route is a GP appointment, urgent referral where cancer is suspected, then specialist tests and a multidisciplinary team. The NHS says a clinical nurse specialist or palliative care team can help you and your loved ones get any support you need.

Private assessment and scans are available, but treatment of bile duct cancer is usually delivered by specialist liver and bile duct teams. Whichever route you use, ask who coordinates your care and how results will be shared. Macmillan Cancer Support is the charity the NHS signposts for treatment information.