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Bile Duct Cancer (Cholangiocarcinoma) - Introduction

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Bile Duct Cancer (Cholangiocarcinoma). Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.

Bile duct cancer begins when healthy cells in the bile duct change and grow out of control, forming a mass called a tumor. A tumor can be benign or cancerous. A benign tumor can grow but will not spread. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. Bile duct cancer is also called cholangiocarcinoma. Cancers of the biliary system, which is made up of the bile duct, gallbladder, and liver, are generally not common, especially in the United States.

About the bile duct

The bile duct is a 4- to 5-inch-long tube that connects the liver and gallbladder to the small intestine. The bile duct allows bile to flow into the small intestine. Bile is a liquid that is made in the liver and stored in the gallbladder. It helps break down fats found in foods. It also helps the body get rid of the waste material that is filtered out of the bloodstream by the liver.

The bile duct starts in the liver. Inside the liver, smaller tubes (or intrahepatic bile ducts), like small blood vessels, drain bile from the cells in the liver into larger and larger branches. These branches end in a tube called the common bile duct. The end of the bile duct empties into the small intestine.

The gallbladder is an organ that holds bile until food reaches the intestines. It is attached to the common bile duct by a small duct, called the cystic duct. This attachment is located about one-third of the way down the bile duct from the liver.

This illustration shows the location and anatomy of the gallbladder and bile ducts. The gallbladder is a small pear-shaped organ, located under the liver. The right and left hepatic ducts branch out to connect to the liver, and come together to form the common hepatic duct, which connects to the gallbladder via the cystic duct. The common hepatic duct connects to the common bile duct, which continues to the distal common bile duct. The common bile duct branches out to connect to the pancreas, located in the curve of the duodenum under and behind the stomach. Copyright 2005-2011 American Society of Clinical Oncology (ASCO). Robert Morreale/Visual Explanations, LLC.

See illustrations of the bile duct.

Types of bile duct cancer

Cancer can occur in any part of the bile duct. Doctors identify the type of bile duct cancer by the location of the tumor in the body:

  • Extrahepatic cholangiocarcinoma. The part of the bile duct that is located outside of the liver is called "extrahepatic." This location is where bile duct cancer is most commonly found. It tends to be the most treatable form of the disease.

  • Hilar cholangiocarcinoma. Another relatively common site for bile duct cancer is the point where the right and left hepatic ducts join. A tumor that starts in this area is also sometimes called a Klatskin’s tumor.

  • Intrahepatic cholangiocarcinoma. About 5% to 10% of bile duct cancers are "intrahepatic." These are located inside the liver.

This section is about primary bile duct cancer, which is cancer that starts in the bile duct. For information about cancer that began in another part of the body and has spread to the bile duct, please see Cancer.Net’s guide for that type of cancer.

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Cancer.Net:

The next section in this guide is Statistics. It helps explain the number of people who are diagnosed with bile duct cancer and general survival rates. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Statistics

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with bile duct cancer each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original source for these statistics is provided at the bottom of this page.

How many people are diagnosed with bile duct cancer?

Primary bile duct cancer is uncommon in the United States. Each year, an estimated 8,000 people in the United States are diagnosed with bile duct cancer. The average age at diagnosis for people with intrahepatic bile duct cancer is 70. For extrahepatic bile duct cancer, the average age at diagnosis is 72.

In some parts of the world, a parasite called a liver fluke can infect the bile duct and cause cancer. Liver flukes are very common in Southeast Asia, and bile duct cancer is more common in this part of the world. Also, gallstones and inflammatory conditions of the digestive tract, such as ulcerative colitis or an associated condition called primary sclerosing cholangitis (PSC), increase the risk of bile duct cancer. PSC is an autoimmune disease in which the body's immune system attacks the bile ducts and causes scarring. See the Risk Factors and Prevention section for more information.

What is the survival rate for bile duct cancer?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from bile duct cancer. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having cancer may affect life expectancy. Relative survival rate looks at how likely people with bile duct cancer are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this cancer.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for people with bile duct cancer are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

The survival rates for bile duct cancer vary based on several factors. These include the stage of cancer, a person’s age and general health, and how well the treatment plan works.

The 5-year relative survival rate for extrahepatic bile duct cancer in the U.S. is 10%. If the cancer is diagnosed in an early stage, the 5-year relative survival rate is 17%. If the cancer has spread to the regional lymph nodes, the 5-year relative survival rate is 16%. If the cancer has spread to a distant part of the body, the 5-year relative survival rate is 2%.

The 5-year relative survival rate for intrahepatic bile duct cancer in the U.S. is 9%. If the cancer is diagnosed at an early stage, the 5-year relative survival rate is 24%. If the cancer has spread to the regional lymph nodes, the 5-year relative survival rate is 9%. If the cancer has spread to a distant part of the body, the 5-year relative survival rate is 2%.

Experts measure relative survival rate statistics for bile duct cancer every 5 years. This means the estimate may not reflect the results of advancements in how bile duct cancer is diagnosed or treated from the last 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society website. (Source accessed February 2023.)

The next section in this guide is Medical Illustrations. It offers drawings of the bile duct. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Medical Illustrations

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will find a drawing of the bile duct, which is the part of the body affected by bile duct cancer. Use the menu to see other pages.

Illustration of bile duct

This illustration shows the location and anatomy of the gallbladder and bile ducts. The gallbladder is a small pear-shaped organ, located under the liver. The right and left hepatic ducts branch out to connect to the liver, and come together to form the common hepatic duct, which connects to the gallbladder via the cystic duct. The common hepatic duct connects to the common bile duct, which continues to the distal common bile duct. The common bile duct branches out to connect to the pancreas, located in the curve of the duodenum under and behind the stomach. Copyright 2005-2011 American Society of Clinical Oncology (ASCO). Robert Morreale/Visual Explanations, LLC.

The next section in this guide is Risk Factors and Prevention. It describes the factors that may increase the chance of developing bile duct cancer. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Risk Factors and Prevention

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will find out more about the factors that increase the chance of developing bile duct cancer. Use the menu to see other pages.

What are the risk factors for bile duct cancer?

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. Knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

The following factors may raise a person’s risk of developing bile duct cancer. However, it is important to note that in the United States, most people with this type of cancer do not have any obvious risk factors.

Previous disease or irritation of the bile duct are a possible risk factor for this cancer. For instance, ulcerative colitis or stones similar to gallstones can cause inflammation of the bile duct. Diseases and conditions that increase the risk of bile duct cancer include:

  • Primary sclerosing cholangitis (PSC). This is a rare inflammatory condition of the bile ducts. No one knows what causes it. See the Statistics section for more information.

  • Choledochal cyst. This is an abnormality that a person has from birth. It causes swelling on the part of the bile duct outside the liver.

  • Caroli syndrome. This is an abnormality of the small bile ducts that a person has in the liver from birth. This syndrome increases the risk of infection and stones, like gallstones, forming in the liver.

  • Cirrhosis. Cirrhosis is liver disease that can cause scarring or long-lasting irritation. Cirrhosis can have many causes, but hepatitis viruses and alcohol consumption are the most common.

  • Liver flukes. Liver flukes are parasites that can infect the bile duct. See the Statistics section for more information.

  • Age. Older adults are more likely to develop bile duct cancer.

  • Certain chemicals. Dioxins, nitrosamines, and polychlorinated biphenyls (PCBs) may cause bile duct cancer. In particular, people who work in rubber plants and automotive industries may be exposed more often to these chemicals.

Are there ways to prevent bile duct cancer?

Different factors cause different types of cancer. Researchers continue to look into what factors cause bile duct cancer, including ways to prevent it. Although there is no proven way to completely prevent bile duct cancer, you may be able to lower your risk.

  • Avoid coming in contact with hazardous chemicals. Thorium dioxide, a chemical once used in x-ray examinations, is associated with a high risk of developing bile duct cancer. Its use has been banned. However, other hazardous chemicals are still available or found in the environment that can increase the risk of developing bile duct cancer.

  • Avoid drinking too much alcohol, which can lead to cirrhosis.

  • If you travel to parts of the world where liver flukes are common, drink only purified water and eat only foods that have been thoroughly cooked.

Talk with your health care team for more information about your personal risk of cancer.

Learn more about cancer prevention and healthy living.

The next section in this guide is Symptoms and Signs. It explains what changes or medical problems bile duct cancer can cause. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will find out more about the changes and medical problems that can be a sign of bile duct cancer. Use the menu to see other pages.

What are the symptoms and signs of bile duct cancer?

People with bile duct cancer may experience one or more of the following symptoms or signs, usually because the tumor is blocking the bile duct. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, people with bile duct cancer do not have any of the symptoms and signs described below. Or, the cause of a symptom or sign may be a medical condition that is not cancer.

Jaundice

Jaundice is a common symptom of bile duct cancer. When the bile duct is blocked, the body's liver cannot excrete bile. This makes bile back up into the bloodstream and can cause jaundice. However, it's important to note that a blockage is not always a cancerous tumor. A gallstone or scar tissue can also block the bile duct.

Jaundice causes the skin and the whites of the eyes to turn yellow. It is caused by high levels of bilirubin in the blood. Bilirubin is dark yellow, and bile contains bilirubin. Bilirubin can cause the skin and whites of the eyes to turn yellow if there are higher levels of it in the bloodstream. It can also make a person’s urine a dark color and make bowel movements pale.

Jaundice is a common symptom for many other medical conditions. Your doctor may need to do several diagnostic tests to find the exact cause of the jaundice. (See the Diagnosis section for a complete list.) Many diseases associated with jaundice are not serious or life-threatening, and bile duct cancer is a less common cause.

Other symptoms of bile duct cancer

  • Itching, caused by a buildup of bile salts and bilirubin in the body that collects in the skin

  • Unexplained weight loss

  • Loss of appetite

  • Fever

  • Abdominal pain. Early bile duct cancer usually does not cause pain, but a person may experience pain if the cancer is large or has spread.

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will try to understand what is causing your symptom(s). They may do an exam and order tests to understand the cause of the problem, which is called a diagnosis.

If bile duct cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. Managing symptoms may also be called "palliative and supportive care," which is not the same as hospice care given at the end of life. You can receive palliative and supportive care at any time during cancer treatment. This type of care focuses on managing symptoms and supporting people who face serious illnesses, such as cancer. Learn more in this guide’s section on Coping with Treatment.

Be sure to talk with your health care team about the symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Diagnosis

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If the cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How bile duct cancer is diagnosed

There are different tests used for diagnosing bile duct cancer. Not all tests described here will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and general health

  • The results of earlier medical tests

In addition to a physical examination, the following lab tests may be used to diagnose bile duct cancer or identify it as the cause of jaundice (see Symptoms and Signs):

  • Blood chemistry tests. Blood chemistry tests measure the levels of bilirubin and alkaline phosphatase and check other liver functions. High levels of these substances could indicate that the bile duct is not working well.

  • Tumor marker tests (CEA and CA19-9). Tumor marker tests look for higher-than-normal amounts of certain substances in the blood, urine, or tissues of people with certain types of cancer. Bile duct cancer may cause high levels of carcinoembryonic antigen (CEA) and CA19-9 in the blood. However, a person can have bile duct cancer even if there are normal levels of these tumor markers. Also, there are diseases other than cancer that sometimes cause high levels of these substances.

Other tests may be performed to provide more information about the bile duct cancer. These include:

  • Biopsy. A biopsy is the only way to make a definite diagnosis, even if other tests can suggest that cancer is present. During biopsy, a small amount of tissue is removed for examination under a microscope. A pathologist analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

    The type of biopsy performed depends on the location of the tumor. The doctor can remove tissue samples during a procedure called a percutaneous transhepatic cholangiography (PTC), which is now rarely used, or another procedure called an endoscopic retrograde cholangiopancreatography (ERCP). PTC and ERCP are described below. Or, a computed tomography scan (CT or CAT scan, see below) may help guide a thin needle through the skin into the suspicious area to collect a sample of cells.

    Occasionally, a biopsy is not possible. In this uncommon situation, people will be treated for bile duct cancer based on other test results and symptoms.

  • Ultrasound. An ultrasound creates a picture of the internal organs using sound waves. During an ultrasound, the doctor may be able to see the actual tumor. However, more often, the ultrasound will show that the small bile ducts have become larger. This is called a “dilation of ducts.” The small bile ducts are located behind a blockage of 1 of the larger bile ducts. Ultrasound can be used to guide a needle through the skin and into the liver toward a suspected cancerous mass to get a sample of the tissue for diagnosis.

    To view the bile duct, the doctor can also use an endoscopic ultrasound. The doctor inserts a thin, flexible tube, called an endoscope, through the mouth. An ultrasound probe is built into the endoscope. A needle can then be passed through the scope to take cells from the mass.

    The doctor may also perform an ERCP. During an ERCP, the doctor inserts a flexible tube down a person’s throat, through the stomach, and into the bile duct. The person is lightly sedated while this occurs. Sedation is the use of medication to become more relaxed, calm, or sleepy. Dye is injected into the tube, which helps outline the bile duct on an x-ray. A tiny brush can also be inserted through the tube to collect cells and tissue fragments for a biopsy. This technique can help find and take a sample of the tumor. It provides information that is important in planning treatment.

    Less commonly, a surgeon may use a laparoscopic ultrasound (see below). Both of these procedures provide a clearer view of the bile duct. This helps the doctor perform a biopsy.

  • Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow. A CT scan can also be used to guide a needle to a suspected tumor.

  • Magnetic resonance imaging (MRI). An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. A specialized MRI used for the bile duct is called MRI cholangiopancreatography. A contrast medium may be given before the MRI to create a clearer picture. This dye can be injected into a patient's vein or given as a pill or liquid to swallow.

  • Percutaneous transhepatic cholangiography (PTC). During this test, a thin needle is inserted into the bile duct in the liver. The doctor injects a contrast medium through the needle that allows the bile ducts to show up on x-rays. By looking at the x-rays, the doctor can tell whether and where there is a blockage of the bile ducts. This is important in planning treatment.

  • Laparoscopy. During laparoscopy, a doctor views the bile duct, gallbladder, and liver through a lighted tube, called a laparoscope. The laparoscope is inserted into a surgical opening in the person’s abdomen. Some laparoscopes can help the doctor take a tissue sample by using small instruments through the tube.

  • Biomarker testing of the tumor. Your doctor may recommend running laboratory tests on a tumor to identify specific genes, proteins, and other factors unique to the tumor. This may also be called molecular testing of the tumor. Results of these tests can help determine your treatment options.

After diagnostic tests are done, your doctor will review the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer. This is called staging.

The next section in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Stages

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. Use the menu to see other pages.

READ MORE BELOW:

What is cancer staging?

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body.

Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor recommend the best kind of treatment and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

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How bile duct cancer is staged

The TNM staging classification used to stage other types of cancers into stages I through IV (1 through 4) is medically complex for bile duct cancer. The headings listed below provide a simpler way to describe the stages of bile duct cancer. By classifying each cancer into 1 of these categories, the health care team can then plan the best treatment strategy.

  • Local. This type of bile duct cancer is located only within the bile duct and can be removed surgically. There is no evidence of spread to areas outside of the bile duct.

  • Locally advanced. This type of bile duct cancer is located only in the area around the bile duct, but it does affect nearby organs, arteries, or veins. There is no evidence of spread to distant parts of the body.

  • Metastatic. The tumor has spread beyond the area of the bile duct to reach distant parts of the body. It is unlikely that surgery can remove all of the cancer.

  • Recurrent. Recurrent cancer is cancer that has come back after treatment. If there is a recurrence, the cancer may need to be staged again (called re-staging) using the system above. It is very rare for recurrent bile duct tumors to be re-staged as “local.”

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Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Types of Treatment

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will learn about the different treatments doctors use for people with bile duct cancer. Use the menu to see other pages.

This section explains the types of treatments, also known as therapies, that are the standard of care for bile duct cancer. “Standard of care” means the best treatments known. Information in this section is based on medical standards of care for bile duct cancer in the United States. Treatment options can vary from one place to another.

When making treatment plan decisions, you are encouraged to discuss with your doctor whether clinical trials offer additional options to consider. A clinical trial is a research study that tests a new approach to treatment. Doctors learn through clinical trials whether a new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Clinical trials are an option for all stages of cancer. Your doctor can help you consider all your treatment options. Learn more about clinical trials in the About Clinical Trials and Latest Research sections of this guide.

How bile duct cancer is treated

In cancer care, different types of doctors who specialize in cancer, called oncologists, often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. Cancer care teams include other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, physical therapists, occupational therapists, and others. Learn more about the clinicians who provide cancer care.

Treatment options and recommendations depend on several factors, including:

  • The type and stage of cancer

  • Possible side effects

  • The person’s preferences and overall health

Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. These types of conversations are called “shared decision-making.” Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your care. Shared decision-making is important for bile duct cancer because there are different treatment options. Learn more about making treatment decisions.

The common types of treatments used for bile duct cancer are described below. Your care plan also includes treatment for symptoms and side effects, an important part of cancer care.

READ MORE BELOW:

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue, called a margin, during an operation. A surgical oncologist is a doctor who specializes in treating cancer using surgery. Surgery to treat bile duct cancer may also be done by a hepatobiliary surgeon, who has special training in treating the liver and bile ducts.

The location and sensitivity of the bile duct area make surgery difficult. The surgery’s effectiveness may also be limited by the tumor's size and where it has spread (see the Stages section). For instance, surgery cannot completely remove metastatic cancer (see below), so additional treatment is necessary in those cases. Talk with your surgeon about what to expect with your specific surgery. If surgery is not an option, the tumor may be called "inoperable" or "unresectable."  In this situation, your doctor will recommend other treatment options. 

Common surgical treatment options for bile duct cancer include:

  • Surgical removal of the bile duct. The surgeon removes the entire organ. This is a treatment option if the tumor has not spread beyond the bile duct. The surgery may also include removal of lymph nodes to check for cancer. Lymph nodes are small, bean-shaped organs that help fight infection.

  • Partial hepatectomy. If the cancer is near the liver, the surgeon will remove part of the liver. The remaining section of the liver takes over the functions of the entire liver. In some cases, it grows back to its normal size within a few weeks.

  • Whipple procedure. The Whipple procedure is an extensive type of surgery that may be recommended if the cancer is near the pancreas. The surgeon removes part or all of the pancreas and part of the small intestine, bile duct, and stomach. The surgeon then reconnects the digestive tract and biliary system, which includes the bile ducts and gallbladder. To maintain the flow of bile, the remaining part of the bile duct is connected to the small intestine. About 5% to 10% of people do not survive this complicated operation. Meanwhile, 25% to 45% have serious complications, such as bleeding, infection, or leaking of bile or pancreatic juices. An experienced surgeon should always perform this procedure.

  • Liver transplantation. The surgeon completely removes the liver and bile ducts. Surgery to remove the liver is called a total hepatectomy. The surgeon then transplants a donor liver. However, bile duct cancer tends to recur very quickly after transplantation. As a result, this procedure is rarely used.

Before surgery, talk with your health care team about the possible side effects from the specific surgery you will have. Learn more about the basics of cancer surgery.

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Radiation therapy

Radiation therapy uses high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period.

The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation therapy is given using implants, it is called internal radiation therapy, or brachytherapy. Internal radiation therapy may be used occasionally for bile duct cancer. Some cancer centers may use a specific type of radiation therapy called radioembolization. During this treatment, a doctor places radioactive beads into the artery that supplies the tumor with blood. The beads deliver radiation directly into the tumor when they become trapped in the small blood vessels of the tumor.

Radiation therapy can be used for treatment of the cancer or to control the symptoms and pain of advanced disease as part of palliative care. It may also be combined with chemotherapy (see below), which is a combination treatment called chemoradiotherapy. In some situations, chemoradiotherapy may be given after surgery to destroy any remaining cancer cells. Talk with your health care team about whether this is a good treatment option for you. Learn more about the American Society of Clinical Oncology's (ASCO) recommendations for treating bile duct cancer with chemoradiotherapy on a separate website.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy.

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Therapies using medication

The treatment plan may include medications to destroy cancer cells. Medication may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may also be given locally, which is when the medication is applied directly to the cancer or kept in a single part of the body.

This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication.

Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If you are given oral medications to take at home, be sure to ask your health care team about how to safely store and handle them.

The types of medications used for bile duct cancer include:

  • Chemotherapy

  • Targeted therapy

  • Immunotherapy

Each of these types of therapies is discussed below in more detail. A person may receive 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.

The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Learn more about your prescriptions by using searchable drug databases.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time.

Researchers are working to improve chemotherapy by studying new drugs or new combinations of drugs through clinical trials. People with bile duct cancer may receive chemotherapy by participating in a clinical trial.

Chemotherapy may be used before surgery to shrink the tumor. It may also be used when surgery is not an option. Research has suggested that the combination of cisplatin (Platinol) and gemcitabine (Gemzar) can lengthen the lives of patients who have bile duct cancer that cannot be removed by surgery.

Chemotherapy should be given after surgery to help prevent a recurrence. ASCO recommends capecitabine (Xeloda) for 6 months after surgery. Additionally, people with hilar cholangiocarcinoma and extrahepatic cholangiocarcinoma may also receive chemoradiotherapy after surgery and capecitabine to destroy remaining cancer cells when there is a positive margin that can be seen with a microscope. A positive margin means that there are cancer cells around the area where the tumor was removed (see "Radiation therapy," above, for more on the ASCO recommendations).

Other drugs that have been used to treat bile duct cancer include fluorouracil (5-FU, Adrucil) and paclitaxel (Taxol). However, bile duct cancers are resistant to many types of chemotherapy, which makes clinical trials much more important for treating this disease.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished.

Learn more about the basics of chemotherapy.

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Targeted therapy

Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells and limits damage to healthy cells.

Not all tumors of the same type or tissue origin have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.

The U.S. Food and Drug Administration (FDA) has approved both pemigatinib (Pemazyre) and infigratinib (Truseltiq) for people with previously treated, unresectable locally advanced or metastatic cholangiocarcinoma with an FGFR2 gene fusion, which occurs in about 10% to 15% of patients. Unresectable means that surgery is not an option. A gene fusion is when 2 genes that used to be separate have joined together and don't function normally as a result. The FGFR2 protein, which is made by the FGFR2 gene, helps cancer grow and spread when it has undergone fusion and becomes overactive. Pemigatinib and infigratinib both bind to the FGFR2 protein to shut down the hyperactivity of FGFR2 and slow down cancer cells with that protein from growing and spreading. Pemigatinib is an oral medication that is given in 21-day cycles. It is given once a day for 14 days followed by 7 days off. Infigratinib is an oral medication that is given once a day for 21 days followed by 7 days off. It should be noted that pemigatinib and infigratinib have not been compared head-to-head in terms of effectiveness.

In 2021, the FDA approved ivosidenib (Tibsovo) for people with previously treated locally advanced or metastatic cholangiocarcinoma with an isocitrate dehydrogenase-1 (IDH1) genetic mutation, which occurs in about 15% of people with this type of cancer. A mutation in the IDH1 gene helps cancer grow, and ivosidenib works by targeting and blocking this gene to slow down cancer growth and spread. Ivosidenib is an oral medication that is given once a day.

In 2022, the FDA approved dabrafenib (Tafinlar) in combination with trametinib (Mekinist) for the treatment of people with biliary tract cancer with a BRAF V600E mutation that is either metastatic or that cannot be removed with surgery. BRAF V600E mutations occur in about 3% of people with cholangiocarcinoma. To receive the combination, a patient's cancer must have either gotten worse following previous treatment or there must be no other satisfactory treatment options available. A BRAF V600 mutation is a specific change in the tumor’s BRAF gene. Dabrafenib is a targeted therapy that works by targeting the BRAF mutation, and trametinib is a targeted therapy that targets the MEK protein, which is involved in cancer growth and survival. Dabrafenib is given as an oral medication twice daily, and trametinib is given as an oral medication once daily.

Like other treatments, targeted therapies can cause side effects, so it is important that your doctor matches your tumor to the best possible treatment and dose. Talk with your doctor about possible side effects for a specific medication and how they can be managed.

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Immunotherapy

Immunotherapy uses the body's natural defenses to fight cancer by improving your immune system’s ability to attack cancer cells.

Durvalumab (Imfinzi) or pembrolizumab (Keytruda) may be used in combination with the chemotherapy drugs gemcitabine and cisplatin for people with locally advanced or metastatic biliary tract cancer, including those with bile duct cancer and gallbladder cancer. Durvalumab and pembrolizumab are a type of immunotherapy called an immune checkpoint inhibitor. An immune checkpoint is a protein that can stop the body’s immune system from responding to cancer cells. Durvalumab and pembrolizumab work by targeting and blocking the immune checkpoint PD-1, which then allows the immune system to find and attack cancer cells.

Pembrolizumab and another immune checkpoint inhibitor, nivolumab (Opdivo), are also approved for all microsatellite instability-high (MSI-H) tumors, including for MSI-H bile duct cancer, which accounts for about 1% of biliary tract cancers. MSI is a genomic marker that indicates a flaw in a cell’s ability to repair damaged DNA, which can lead to an increase in genetic changes, or mutations. These mutations produce abnormal proteins on the tumor cells that allow immune cells to find and attack the tumor more easily.

Different types of immunotherapy can cause different side effects. Common side effects include skin reactions, flu-like symptoms, diarrhea, and weight changes. Talk with your doctor about possible side effects for the immunotherapy recommended for you. Learn more about the basics of immunotherapy.

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Physical, emotional, social, and financial effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative and supportive care. It is an important part of your care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative and supportive care focuses on improving how you feel during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative and supportive care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. You may also receive palliative treatments, such as chemotherapy, surgery, or radiation therapy, to improve symptoms. For instance, palliative surgical options may include stent placement and surgical bypass (see below). 

Before treatment begins, talk with your doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Cancer care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns.

During treatment, your health care team may ask you to answer questions about your symptoms and side effects and to describe each problem. Be sure to tell the health care team if you are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative and supportive care in a separate section of this website.

Stent placement and surgical bypass

In some cases, surgery cannot completely remove the bile duct tumor, but it can still help relieve symptoms and improve the person’s quality of life.

In this situation, a surgeon may be able to bypass the blocked area. This involves connecting a part of the bile duct located before the blockage to a part of the small intestine located beyond the blockage. During this procedure, the surgeon may insert a plastic or metal tube into the bile duct to keep it open. This tube is called a stent.

In addition, a plastic or metal stent may be used to pass through the blockage during an endoscopic retrograde cholangiopancreatography (ERCP) procedure or a procedure similar to percutaneous transhepatic cholangiography (PTC). Both of these procedures are described in the Diagnosis section earlier in this guide. These procedures do not remove the tumor. However, they can relieve side effects, and people often experience long periods when all symptoms disappear and their quality of life improves after these procedures.

For both of these procedures, the doctor may insert the stent internally. However, sometimes this is not possible. In those cases, a tube passes through the liver to redirect the bile outside of the body and into a bag. The bag needs to be changed regularly. Some doctors suggest that these patients receive long-term antibiotics to protect against infection. If this is recommended for you, talk with your health care team about maintaining the bag and watching for signs of infection.

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Metastatic bile duct cancer

If cancer spreads to another part of the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Clinical trials might also be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

Your treatment plan may include a combination of surgery, radiation therapy, and therapies using medication. Palliative and supportive care will also be important to help relieve symptoms and side effects.

For many people, a diagnosis of metastatic cancer is very stressful and difficult. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of your health care team. It may also be helpful to talk with other patients, such as through a support group or other peer support program.

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Remission and the chance of recurrence

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it is important to talk with your doctor about the possibility of the cancer returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

If a recurrence happens, a new cycle of testing will begin to learn as much as possible about it. After this testing is done, you and your doctor will talk about the treatment options. Often the treatment plan will include the treatments described above, such as surgery, radiation therapy, and/or chemotherapy, but they may be used in a different combination or given at a different pace. Your doctor may suggest clinical trials that are studying new ways to treat recurrent bile duct cancer. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

People with recurrent cancer sometimes experience emotions such as disbelief or fear. You are encouraged to talk with your health care team about these feelings and ask about support services to help you cope. Learn more about dealing with cancer recurrence.

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If treatment does not work

Recovery from bile duct cancer is not always possible. If the cancer cannot be cured or controlled, the disease may be called advanced or terminal.

This diagnosis is stressful, and for some people, advanced cancer is difficult to discuss. However, it is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help. Making sure a person is physically comfortable, free from pain, and emotionally supported is extremely important.

Planning for your future care and putting your wishes in writing is important, especially at this stage of disease. Then, your health care team and loved ones will know what you want, even if you are unable to make these decisions. Learn more about putting your health care wishes in writing.

People who have advanced cancer and who are expected to live less than 6 months may want to consider hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to talk with your doctor or a member of your palliative care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

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The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - About Clinical Trials

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ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for people with bile duct cancer. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Clinical trials are used for all types and stages of bile duct cancer. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating bile duct cancer. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with bile duct cancer.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” When used, placebos are usually combined with standard treatment in most cancer clinical trials. Study participants will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, people must participate in a process known as informed consent. During informed consent, the doctor should:

  • Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

  • Describe the purposes of the clinical trial and what researchers are trying to learn.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. You will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.

People who participate in a clinical trial may stop participating at any time for personal or medical reasons. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that people participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trial before it ends.

Finding a clinical trial

For specific topics being studied for bile duct cancer, learn more in the Latest Research section.

Cancer.Net offers more information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

There are many resources and services to help you search for clinical trials for bile duct cancer, including the following services. Please note that these links will take you to separate, independent websites:

  • ClinicalTrials.gov. This U.S. government database lists publicly and privately supported clinical trials.

  • World Health Organization (WHO) International Clinical Trials Registry Platform. The WHO coordinates health matters within the United Nations. This search portal gathers clinical trial information from many countries’ registries.

Read more about the basics of clinical trials matching services.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials in another section of this website.

The next section in this guide is Latest Research. It explains areas of scientific research for bile duct cancer. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Latest Research

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will read about the scientific research being done to learn more about bile duct cancer and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about bile duct cancer, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the best diagnostic and treatment options for you.

New drugs are a major focus of bile duct cancer research. Specifically, research is aimed at finding out whether new drugs that work differently than standard chemotherapy might work better for advanced biliary tract cancer. Areas of research for bile duct cancer include:

  • Targeted therapies. As explained in Types of Treatment, targeted therapy is drug treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. Scientists are researching the genetic causes of bile duct cancer to find possible targeted therapies. People with advanced bile duct cancer are encouraged to talk with their doctors about molecular testing of their tumor tissue. Learn more about the basics of targeted treatments.

  • Immunotherapy. As outlined in Types of Treatment, immunotherapy is designed to boost the body’s natural defenses to fight the cancer. Researchers continue to investigate how immunotherapy may be useful for bile duct cancer treatment.

  • Photodynamic therapy (PDT). During PDT, a doctor gives an inactive form of a drug and then directs a special light at the tumor in the bile duct, using an endoscope in a procedure similar to endoscopic retrograde cholangiopancreatography (ERCP). (See the Diagnosis section for more information about this procedure.) This causes a chemical change in the drug, activating it to eliminate the tumor cells where the light is directed. PDT is currently used to relieve pain and symptoms, not to eliminate bile duct cancer. Doctors are also looking at whether PDT can reduce the risk of a stent becoming blocked by stopping the tumor from growing into it.

  • Radiosensitizers. Researchers are looking at radiosensitizers to treat bile duct cancer. Radiosensitizers are drugs that make tumor cells more likely to be destroyed by radiation therapy.

  • Palliative and supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current bile duct cancer treatments to improve comfort and quality of life for patients.

Looking for More About the Latest Research?

If you would like more information about the latest areas of research in bile duct cancer, explore these related items that will take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Coping With Treatment

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ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people do not experience the same side effects even when they are given the same treatment for the same type of cancer. This can make it hard to predict how you will feel during treatment.

READ MORE BELOW:

As you prepare to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. This part of cancer treatment is called palliative and supportive care. It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for bile duct cancer are described in the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.

Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.

You may find it helpful to keep track of your side effects so it is easier to talk about any changes with your health care team. Learn more about why tracking side effects is helpful.

Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-Up Care section of this guide or talking with your doctor.

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Coping with emotional and social effects

You can have emotional and social effects after a cancer diagnosis. This may include dealing with a variety of emotions, such as sadness, anxiety, fear, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

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Coping with the costs of cancer care

Cancer treatment can be expensive. It may be a source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost of medical care stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Patients and their families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

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Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health, such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities, people with fewer financial resources, sexual and gender minorities (LGBTQ+), adolescent and young adult populations, adults older than 65, and people who live in rural areas or other underserved communities.

If you are having difficulty getting the care you need, talk with a member of your health care team or explore other resources that help support medically underserved people.

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Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

  • When and who should I call about side effects?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.

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Caring for a loved one with bile duct cancer

Family members and friends often play an important role in taking care of a person with bile duct cancer. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves.

Caregivers may have a range of responsibilities on a daily or as-needed basis, including:

  • Providing support and encouragement

  • Talking with the health care team

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to and from appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. It may be helpful to ask the health care team how much care will be needed at home and with daily tasks during and after treatment. Use this 1-page fact sheet to help make a caregiving action plan. This free fact sheet is available as a PDF, so it is easy to print.

Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish.

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Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

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The next section in this guide is Follow-Up Care. It explains the importance of checkups after cancer treatment is finished. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Follow-Up Care

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ON THIS PAGE: You will read about your medical care after receiving cancer treatment and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with bile duct cancer does not end after active treatment. Your health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. Researchers are studying ways to prevent recurrences, but there is no standard preventive treatment for bile duct cancer at this time.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence or a secondary tumor. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.

Watching for stent or bypass problems

For people who received a stent or surgical bypass to relieve jaundice, follow-up care involves checking whether the stent is still working to remove the blockage. Patients should contact a doctor immediately if:

  • Jaundice becomes worse, becoming a deeper yellow

  • Jaundice comes back after the stent originally cleared the blockage

  • A fever develops, along with sweating, shaking, or abdominal pain

In these cases, the stent may need to be changed or repositioned.

Managing long-term and late side effects

Most people expect to have side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years after treatment has ended. Long-term and late effects can include both physical and emotional changes.

A long-term side effect of treatment for bile duct cancer is the development of strictures after surgery to the biliary system. Strictures are noncancerous scars that form slowly. They may narrow the bile ducts, causing symptoms similar to those of the original bile duct cancer.

There is also a chance of developing another type of cancer, called a secondary cancer.

Talk with your doctor about your risk of developing such side effects based on your diagnosis, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. The American Society of Clinical Oncology (ASCO) offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan when treatment is completed.

This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the care of their primary care doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, treatments received, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with them and with all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Survivorship

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ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” is complicated because it means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and continues during treatment and through the rest of a person’s life.

For some, the term “survivorship” itself does not feel right, and they may prefer to use different language to describe and define their experience. Sometimes long-term treatment will be used for months or years to manage or control cancer. Living with cancer indefinitely is not easy, and the health care team can help you manage the challenges that come with it. Everyone has to find their own path to name and navigate the changes and challenges that are the results of their cancer diagnosis and treatment.

Survivors may experience a mixture of feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain about coping with everyday life. Feelings of fear and anxiety may still occur as time passes, but these emotions should not be a constant part of your daily life. If they persist, be sure to talk with a member of your health care team.

Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and people miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexual health and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • Feeling comfortable with the course of action you choose

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the place where you received treatment.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make lifestyle changes.

People recovering from bile duct cancer are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, exercising regularly, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

It is important to have recommended medical checkups and tests (see Follow-Up Care) to take care of your health.

Talk with your health care team to develop a survivorship care plan that is best for your needs.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving.

Looking for More Survivorship Resources?

For more information about survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:

  • ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.

  • Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children, teens and young adults, and people over age 65. There is also a main section on survivorship for people of all ages.

The next section offers Questions to Ask the Health Care Team to help start conversations with your cancer care team. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • What type of bile duct cancer do I have? Where is it located?

  • Can you explain my pathology report (laboratory test results) to me?

  • What is the stage of my cancer? What does this mean?

  • What is my prognosis?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What types of research are being done for bile duct cancer in clinical trials? Do clinical trials offer additional treatment options for me?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?

  • How can I keep myself as healthy as possible during treatment?

  • If I am worried about managing the costs of cancer care, who can help me?

  • What support services are available to me? To my family?

  • If I have questions or problems, who should I call?

Questions to ask about having surgery

  • What type of surgery will I have? Will lymph nodes be removed?

  • How long will the operation take?

  • How long will I be in the hospital?

  • Can you describe what my recovery from surgery will be like?

  • Who should I contact about any side effects I experience? How soon?

  • What are the possible long-term or late effects of having this surgery?

Questions to ask about having radiation therapy

  • What type of radiation therapy is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during this treatment?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve the side effects?

Questions to ask about therapies using medication, such as chemotherapy

  • What type of medication is recommended?

  • What is the goal of this treatment?

  • Will I receive this treatment at a hospital or clinic? Or will I take it at home? 

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • What signs may indicate that my stent has become blocked?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • What follow-up tests will I need, and how often will those tests be needed?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • When should I return to my primary care doctor for regular medical care?

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Additional Resources

Approved by the Cancer.Net Editorial Board, 09/2023

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Bile Duct Cancer (Cholangiocarcinoma). To go back and review other pages, use the menu.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Bile Duct Cancer (Cholangiocarcinoma). Use the menu to choose a different section to read in this guide.