About Us
Our Team
Our History
Our History
Our amazing team of regulars and part-time volunteers are committed to helping others. We take our convictions and turn them into action. Think you would be a good fit? Get in touch for more information!
Our History
Our History
Our History
Seeing a need to bring more awareness and funds for Cholangiocarcinoma, a rare cancer, also called Bile Duct Cancer, we formed this organization to educate the local public about this deadly cancer that is now affecting so many young people.
Our Mission
Our History
Our Mission
Our mission is to raise awareness and funds for Cholangiocarcinoma, a rare and usually deadly cancer. and to be a resource with those dealing with this cancer,
Site Content
WHAT IS CHOLANGIOCARCINOMA (Bile Duct Cancer)?
WHAT IS CHOLANGIOCARCINOMA (Bile Duct Cancer)?
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/
key statistics
WHAT IS CHOLANGIOCARCINOMA (Bile Duct Cancer)?
WHAT IS CHOLANGIOCARCINOMA (Bile Duct Cancer)?
- About 8,000 people in the United States develop cholangiocarcinoma each year.
- Cholangiocarcinoma is much more common in Asia and the Middle East, 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
Symptoms
WHAT IS CHOLANGIOCARCINOMA (Bile Duct Cancer)?
Risk Factors
- Chills
- Clay-colored stools
- Dark urine
- Fever
- Itching (pruritus)
- Loss of appetite
- Nausea
- Pain in the upper right abdomen that may radiate to the back
- Weight Loss
- Yellowing of the skin (jaundice)
Risk Factors
Why is cholangiocarcinoma considered a rare cancer?
Risk Factors
Diseases in the liver or bile ducts
Primary Sclerosing Cholangitis
Abnormalities where the bile duct and pancreatic duct meet
Other rare diseases of the liver and bile duct
Other risk factors include
Adapted from National Institutes of Health: http://www.cancer.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.
SAVE THE DATE
Why is cholangiocarcinoma considered a rare cancer?
Why is cholangiocarcinoma considered a rare cancer?
****Unfortunately, due to Covid-19, we have to cancel our Oktoberfest 2020. But we will come back bigger and better in 2021!! However a virtual Oktoberfest is being planned. Stay tuned for that!
Saturday, September 19, 2020 is our 2nd annual traditional family-friendly Oktoberfest fundraiser for the Cholangiocarcinoma Foundation from 4:00-9:00 p.m. at the Covington Trailhead. Last year, our first year, we were hoping to break even, raise awareness, and have a good time so people will want to return. We ran out of armbands at 1,000 and estimate 1,200-1,300 people attended and we were able to send $10,000 to the foundation and put $1,500 in the bank to start on this year's event. This year we have a fun and popular German band called The Brats, performing, more interactive activities and songs for all ages, a " Bile Duck Depot" store filled with adorable duck, and items, lots more Bile Duck games for children and some interesting adult games. You won't want to miss it!!
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Your support and contributions will enable us to meet our goals of raising awareness and funds for the Cholangiocarcinoma Foundation to provide research to find cures, treatments, and early diagnosis of Cholangiocarcinoma, also called Bile Duct Cancer. . Going through cancer treatments is very expensive and medical insurance does not cover all bills. So funds will also be used to help Cholangiocarcinoma patients in Louisiana with some bills. Your generous donation will help fund our mission.