- 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
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.
- 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.
- 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.
- 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 cancer.gov