Key Statistics

  • About 10,000 people in the United States develop cholangiocarcinoma each year.
  • Cholangiocarcinoma is much more common in Asia, mostly because of a common parasitic infection of the bile duct.
  • Almost 2 out of 3 people with cholangiocarcinoma are 65 or older when it is found.
    • The average age of people diagnosed with cancer of the intrahepatic bile ducts is 70.
    • The average age of people diagnosed with cancer of the extrahepatic bile ducts (perihilar or distal cholangiocarcinoma) is 72.
  • The chances of survival for patients with bile duct cancer depends to a large extent on its location and how advanced it is when it is found.

Adapted from the American Cancer Society

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Why is cholangiocarcinoma considered a rare cancer?

About Rare Cancers

Rare cancers are those that affect fewer than 40,000 people per year in the U.S. As a group, they make up just over a quarter of all cancers.

Why are rare cancers challenging?

Rare cancers are challenging for patients, doctors, and scientists.

For patients:

  • It often takes a long time from the time you think something is wrong to the time when doctors know that you have a rare cancer and what kind of cancer it is.
  • It is hard to find doctors who know a lot about your cancer and how to treat it.
  • It is hard to know what to do when doctors don’t agree on how to treat your cancer.
  • You may need to travel far from your home and family to get treatment for your rare cancer.

For doctors:

  • You may not know what to tell your patient about what to expect with their rare cancer.
  • You may not have been trained in how to treat this type of rare cancer.
  • It is hard to find an expert in the rare cancer who can answer questions or to whom you can refer your patient.

For scientists:

  • There may be no information about the rare cancer to give you ideas on which drugs could treat it.
  • There may be no animal or cell models of the rare cancer in which to test your ideas.
  • There may not be enough tumor samples from rare cancer patients available for your research.
  • If you have an idea of a drug that could treat the cancer, it may be hard to find enough patients with the rare cancer to test your idea.

Adapted from