Cholangiocarcinoma: The First Step Can Be The Most Challenging

While no one wants to think about the big “C” word when faced with an unknown medical ailment, it’s important for patients with abnormalities of the liver to rule out cancer. Prompt, accurate diagnosis is the first step to any successful treatment. As a surgeon at Roswell Park, I see all too often missed or delayed diagnosis of a rare type of cancer that forms in the bile ducts, called cholangiocarcinoma.

Cholangiocarcinoma can start anywhere along the bile ducts and can cause blockage. The bile ducts serve as an excretion system, supporting the liver’s role in processing and excreting waste out of the system. The easiest way to understand the relationship between the liver and the bile ducts is to think of the liver as a tree. The trunk and branches are the bile ducts, while the leaves are the liver itself.

Because they typically do not cause any unique symptoms, cholangiocarcinomas can be misdiagnosed and are often discovered incidentally during medical tests. For instance, abnormal results from a blood test taken following a change in blood pressure or cholesterol medication might be the first indication that something is wrong. Other times, the tumors are found during imaging tests, such as ultrasounds or CT scans, being performed for non-related conditions.

What is frustrating to me as a surgeon and is just as frustrating to my patients is the frequent lag in diagnosis of this disease. Cholangiocarcinoma patients are often subjected to a battery of tests, some redundant and unnecessary, and much time passes before a correct diagnosis is made. Therefore, while there are no screening tests for this type of cancer, patients diagnosed with something in the liver, such as a bile duct stricture, need to make sure they are seen by a team of doctors that specialize in both benign (non-cancerous) and malignant (cancerous) conditions of the liver and biliary tract.  You do not need a tissue diagnosis to be referred to a place like Roswell Park that treats patients with cholangiocarcinoma and related cancers. Seeking multiple opinions and making sure you rule out cancer – even rare forms of cancer like cholangiocarcinoma - is the best way to ensure an accurate diagnosis and the most successful treatment outcome possible. 

Dr. Wilkinson is no longer with Roswell Park.