Cholangiocarcinoma Information
What is Cholangiocarcinoma (Bile Duct Cancer)?
Cholangiocarcinoma starts in the bile duct, a thin tube, about 4 to 5 inches long, that reaches from the liver to the small intestine. The major function of the bile duct is to move a fluid called bile from the liver and gallbladder to the small intestine, where it helps digest the fats in food.
Different parts of the bile duct system have different names. In the liver it begins as many tiny tubes (ductules) where bile collects from the liver cells. The ductules come together to form small ducts, which then merge into larger ducts and eventually the left and right hepatic ducts. The ducts within the liver are called intrahepatic bile ducts. These ducts exit from the liver and join to form the common hepatic duct at the hilum.
About one-third of the way along the length of the bile duct, the gallbladder (a small organ that stores bile) attaches by a small duct called the cystic duct. The combined duct is called the common bile duct. The common bile duct passes through part of the pancreas before it empties into the first part of the small intestine (the duodenum), next to where the pancreatic duct also enters the small intestine.
Cancers can develop in any part of the bile duct and, based on their location, are classified into 3 types:
- Intrahepatic cholangiocarcinoma
- Perihilar cholangiocarcinoma
- Distal cholangiocarcinoma
Cancers in these different areas may cause different symptoms.
Adapted from National Institutes of Health: http://www.nih.gov/
Why is cholangiocarcinoma considered a rare cancer?
Why is cholangiocarcinoma considered a rare cancer?
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. Because rates of cancer in children are very low, all children’s cancers are considered rare. A quarter of all cancer deaths each year are due to rare cancers. Although new treatments are always being developed, finding new treatments for rare cancers can be difficult for many reasons.
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 cancer.gov
Why an Oktoberfest Fundraiser?
Why is cholangiocarcinoma considered a rare cancer?
Why is cholangiocarcinoma considered a rare cancer?
I was raised by a beautiful Viennese mother on schnitzel, strudel, polkas, German Beer drinking songs, and going to German dances and Oktoberfests. I used to have Oktoberfests at my house with friends, and then rented neighborhood clubhouses to accommodate more people. I realized it would be a good fundraiser and so did it for several years for an African mission that my husband and I were involved with.
But in 2018, I attended my first Cholangiocarcinoma Foundation Conference, and it changed the focus of my life and gave me a new mission and passion. I had been a Cholangiocarcinoma survivor for 6 1/2 years and had no recurrences and was doing very well. I had 3/4 of my liver and my gallbladder removed, seven months of chemo, and 6 weeks of radiation. If you are eligible for surgery, you have a much better rate of survival with this cancer. This is a cancer for older people and the average age is 72, but so many diagnosed that I have met at the conferences or online are 20-40 years old with children and their whole lives ahead of them. I wanted to make a difference and help others with this cancer and so I started A Rhea of Hope, whose mission is to raise awareness and funds for the Cholangiocarcinoma Foundation and to help local patients diagnosed with this cancer. When I decided to have a fundraiser, a family-friendly, traditional German Oktoberfest is what I wanted to do. It is fun, part of my heritage, and I felt the Northshore could use a good German Oktoberfest and it could raise awareness and funds to help others.