What Is Metastatic Bile Duct Cancer?

Medically Reviewed by Laura J. Martin, MD on August 01, 2022
Written by Shawna Seed
5 min read

Bile duct cancer – also called cholangiocarcinoma – is a rare condition. When you have cholangiocarcinoma, cancer cells grow in your bile ducts, which are a part of your digestive system.

Bile duct cancer is considered metastatic when it has spread from the place it started. It can move to your lymph nodes, liver, other parts of your abdominal cavity, or more distant parts of your body.

Your liver, gallbladder, and small intestine are connected by a series of tubes, or ducts. The duct system starts in your liver, where you produce bile, a liquid that helps your body break down fats you eat. Small ducts in your liver gather the bile. These ducts lead into the left and right hepatic ducts.

The left and right hepatic ducts come together outside the liver, forming the common hepatic duct. It’s connected to your gallbladder by the cystic duct. These ducts move bile from your liver to your gallbladder, where it’s stored until your body needs it for digestion.

When it’s time to digest food, your gallbladder sends bile through the cystic duct to common bile duct, and from there to your small intestine. 

There are two types of bile duct cancer, based on where the cancer cells first form:

  • Intrahepatic bile duct cancer starts inside your liver.
  • Extrahepatic bile duct cancer starts outside your liver. Although all types of bile duct cancer are rare, this is the more common type.

 Researchers don’t know exactly what causes cells in your bile ducts to become cancerous. But certain things increase your chances of having bile duct cancer. They include:

  • Primary sclerosing cholangitis, a disease that causes your bile ducts to harden and scar
  • Chronic liver disease that scars this organ
  • Choledochal cyst, a bile duct problem you may be born with
  • Liver fluke infection, a problem caused by a parasite. It’s particularly a problem in Southeast Asia and is linked to eating raw or undercooked fish.
  • Age – the condition is most common if you are older than 50
  • Smoking
  • Diabetes, type 1 or type 2
  • Inherited conditions, such as cystic fibrosis or Lynch syndrome, a cause of hereditary colon cancer 

Signs that you may have bile duct cancer can include:

  • Skin or eyes with a yellow cast (jaundice)
  • Dark urine
  • Clay-colored bowel movements
  • Belly pain
  • Fever
  • Itchy skin
  • Nausea
  • Vomiting
  • Weight loss without trying

Unlike some other cancers, there’s no routine screening you can have to detect bile duct cancer.

If you have symptoms of bile duct cancer, your doctor will take several steps to make a diagnosis. That will start with taking your health history and a physical exam.

Tests you might have include:

  • Liver function, to see whether this organ is producing high levels of substances that indicate a problem
  • Ultrasound exam, which bounces sound waves off your body to produce images of your organs and other tissue
  • Magnetic resonance imaging (MRI), which uses a magnet and radio waves to produce images of the inside of your body
  • Magnetic resonance cholangiopancreatography (MRCP), a type of MRI that creates images of your liver, bile ducts, gallbladder, and pancreas
  • CT scan, which uses X-rays and a computer to create images. Sometimes dye is used – injected into your body or swallowed – to make the images clearer.
  • Carcinoembryonic antigen (CEA) and CA 19-9 tumor marker tests, which check your blood for these substances. High levels CEA and CA 19-9 can signal bile duct cancer.

Your doctor also may order a biopsy, a procedure that removes a sample of tissue from your body. A pathologist then studies the tissue to check for cancer cells.

You may want to bring a list of questions to the appointment with you. That will help keep you on track to address your concerns.

Questions to ask include:

  • Do I have bile duct cancer? If so, what type? What stage?
  • Can I see the pathology report? What does it say?
  • Do I need more tests?
  • What’s the treatment plan?
  • What treatment is best for me?
  • What are the side effects of treatment? How will it affect my life?
  • How much time can I take to make a decision about treatment?
  • How much experience do you have with cases like mine?

Bile duct cancer is a difficult cancer to treat.

Surgery is often the first step. But when your bile duct cancer is metastatic, it can’t be entirely removed by surgery.

Your treatment plan also might include these steps, which can reduce your symptoms and improve your quality of life:

  • Opening a path for bile to flow, either by propping up the duct with a device called a stent or rerouting the bile
  • Radiation therapy, which can use high-powered energy beams directed at your body to kill cancer cells or radioactive material placed inside your body near the site of your cancer
  • Chemotherapy uses drugs to slow the growth of cancer and reduce symptoms. It can be delivered through an IV or sent straight to cancer cells.
  • Targeted therapy uses drugs to attack specific properties of the cancer cells, killing them.
  • Immunotherapy uses your own immune system to attack cancer cells. Cancer cells have certain properties that help them hide from your immune system. This treatment interferes with that process so that cancer cells are vulnerable to attack.

Your cancer diagnosis could change your life in many ways. It’s a complicated disease, and treatment can involve many health care professionals. There are steps you can take to help you manage your illness. 

For instance, you can:

  • Set goals, whether that’s managing a specific symptom or related to something in your life outside your illness. Then create a plan to achieve those goals.
  • Adjust to new nutrition needs. You may need to eat differently in order to keep your strength up and help you withstand treatment.

Your prognosis depends on the extent of your cancer and other highly individual things. Your age, overall health, and how well you respond to treatment make a difference.

The 5-year survival rates are broken down according to where the cancer started (in the liver or outside the liver) and how far the cancer has spread, or metastasized, beyond that point.

For intrahepatic bile duct cancer that has spread, the 5-year survival rate is 2%-9%.

For extrahepatic bile duct cancer that has spread, the 5-year survival rate is 2%-16%.

Remember, these numbers are based on people who were treated in previous years. Advances in medicine can alter the outlook.

Start with your health care professional. Ask about informational pamphlets or websites you should check out.

You also may want to contact the National Cancer Institute, the American Cancer Society, or the Cholangiocarcinoma Foundation.

It can be difficult to deal with a life-altering illness like bile duct cancer. But these steps may help you cope.

  • Learn about your condition.
  • Turn to family and friends for support, including practical matters such as rides to treatment and help around the house.
  • Talk to someone outside your family and friends for support, if necessary. That could be a therapist, social worker, or counselor.
  • Connect with others who have your condition.
  • Prepare for what may lie ahead. This could include making end-of-life plans, such as putting together an advance directive and living will.

Your team will depend on your treatment plan. Health care workers who will consult on your care may include specialists in:

  • Gastroenterology (the digestive system)
  • Hepatology (the liver)
  • Radiology
  • Medical oncology
  • Radiation oncology
  • Surgery