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Bile Duct Cancer (Cholangiocarcinoma) - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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). To see other pages, use the menu. Think of that menu as a roadmap to this full 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 cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. Bile duct cancer is often called cholangiocarcinoma. A benign tumor can grow but will not spread. Cancers of the biliary system are relatively rare, especially in the United States.

About the bile duct

The bile duct is a 4-inch 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.

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 cancer most commonly is 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.

The next section in this guide is Statistics. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide.  

Bile Duct Cancer (Cholangiocarcinoma) - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find information about how many people are diagnosed with this type of cancer each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu.

Primary bile duct cancer is uncommon in the United States. Each year, an estimated 2,000 to 3,000 people in the United States are diagnosed with bile duct cancer. The number of new cases of bile duct cancer is increasing, mostly due to rising rates of intrahepatic bile duct cancer. The reason for this increase is not known. It may be due to the use of more accurate tests to diagnose this type of cancer. Previously, intrahepatic bile duct cancer may have been thought to be a different type of cancer.

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 Asia and the Middle East, and bile duct cancer is more common in these areas 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 section for more information.

The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for people with early-stage extrahepatic bile duct cancer is 30%. If the cancer has spread to the regional lymph nodes, the 5-year survival rate is 24%. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%.

For people with early-stage intrahepatic bile duct cancer, the 5-year survival rate is 15%. If the cancer has spread to the regional lymph nodes, the 5-year survival rate is 6%. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%.

It is important to remember that statistics on how many people survive this type of cancer are an estimate. The estimate comes from data based on thousands of people with this cancer in the United States each year. So, your own risk may be different. Doctors cannot say for sure how long anyone will live with bile duct cancer. Also, experts measure the survival statistics every 5 years. This means that the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Learn more about understanding statistics.

Source: American Cancer Society website.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by this disease. Or, use the menu to choose another section to continue reading this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Medical Illustrations

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find a basic drawing of the bile duct, which is the part of the body affected by this disease. To see other pages, use the menu.

The next section in this guide is Risk Factors. It explains what factors may increase the chance of developing this disease. Or, use the menu to choose another section to continue reading this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. To see other pages, use the menu.

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. However, 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 patients do not have any obvious risk factors:

  • Previous disease or irritation of the bile duct. 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 within the liver that a person has 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. People who work in rubber plants and automotive industries may be exposed to these chemicals.

Prevention

Different factors cause different types of cancer. Researchers continue to look into what factors cause this type of cancer. Although there is no proven way to completely prevent this disease, 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 alcohol abuse, 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 doctor for more information about your personal risk of cancer.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu.

People with bile duct cancer may experience the following symptoms or signs, usually because the tumor is blocking the bile duct. Sometimes, people with bile duct cancer do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not cancer.

Jaundice

When the bile duct is blocked, the liver cannot excrete bile. This makes bile back up into the bloodstream and can cause jaundice. However, the blockage may not be caused by cancer. A gallstone or scar tissue can also block the bile duct.

Jaundice is a common symptom of bile duct cancer. 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.

It is important to note that jaundice is a common symptom for many 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 1 of the less common causes.

Other symptoms of bile duct cancer

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

  • 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 ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about 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. Or, use the menu to choose another section to continue reading this guide.  

Bile Duct Cancer (Cholangiocarcinoma) - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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. To see other pages, use the menu.

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 this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. 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 whether 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.

This list describes options for diagnosing this type of cancer. Not all tests listed below 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 medical condition

  • The results of earlier medical tests

In addition to a physical examination, the following 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 removal of a small amount of tissue for examination under a microscope. A pathologist then 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 area to collect a sample of cells.

    Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. 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 uses sound waves to create a picture of the internal organs. 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 cancer to get tissue for diagnosis.

    To view the bile duct, the doctor may alternatively 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 be passed through the scope to take cells from the mass.

    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 creates a 3-dimensional picture of the inside of the body using x-rays taken from different angles. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also 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 to swallow. A CT scan can also be used to guide a needle to a suspected tumor mass. 

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. 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.

  • 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.

  • ERCP. During this procedure, the doctor inserts a flexible tube down a person’s throat, through the stomach, and into the bile duct. The patient 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.

  • 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.

After diagnostic tests are done, your doctor will review all of 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. Or, use the menu to choose another section to continue reading this guide.  

Bile Duct Cancer (Cholangiocarcinoma) - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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

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 decide which kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

The TNM classification used to stage other types of cancers into stages I through IV (one through four) 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 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 tumors to be re-staged as “local.”

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu to choose another section to continue reading this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will learn about the different ways doctors use to treat people with this type of cancer. To see other pages, use the menu.

This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it 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. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

Treatment overview

In cancer care, different types of doctors 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 also include a variety of other health care professionals, including physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

Descriptions of the most common treatment options for bile duct cancer are listed below. Treatment options and recommendations depend on several factors, including:

  • The type and stage of cancer

  • Possible side effects

  • The patient’s preferences and overall health

Your care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue 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 hepatobiliary surgeons, who have special training in treating the liver and bile ducts. Learn more about the basics of cancer surgery.

The location and sensitivity of the bile duct area make surgery difficult. And the surgery’s effectiveness may be limited by the tumor size and where it has spread (see the Stages section). For instance, surgery cannot completely remove metastatic cancer, and additional treatment is necessary.

Common surgical treatment options for bile duct cancer include:

  • Surgical removal of the bile duct. The surgeon removes the entire organ. It 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 tiny, 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 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.

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. 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. Occasionally, internal radiation therapy may be used for bile duct cancer.

A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy can be used for treatment or to control the symptoms and pain of advanced disease. 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.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

A chemotherapy regimen (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 combinations of different drugs at the same time.

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

Chemotherapy may be used before surgery to shrink the tumor or 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.

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

Chemotherapy may also be given after surgery to help prevent a recurrence. However, researchers are still testing how well this approach works in clinical trials.

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 once treatment is finished.

Learn more about the basics of chemotherapy and preparing for treatment. 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. Learn more about your prescriptions by using searchable drug databases.

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, or radiation therapy. Talk with your doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care

Stent placement and surgical bypass

In some cases, surgery cannot completely remove the tumor. However, surgery can still help relieve symptoms and improve 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 the ERCP procedure or a procedure similar to PTC (learn more in the Diagnosis section). These procedures do not remove the tumor. However, they can relieve side effects. People often experience long periods when all symptoms disappear and their quality of life improves.

For both of these procedures, the doctor may insert the stent internally. Sometimes, this is not possible. In those cases, a tube passes through the liver to redirect the bile outside the body into a bag. The bag needs to be changed regularly. Some doctors suggest that these patients receive long-term antibiotics to protect against infection. 

Metastatic bile duct cancer

If cancer spreads to another part in 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. Also, clinical trials might 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 chemotherapy. Palliative care will also be important to help relieve symptoms and side effects.

For most patients, a diagnosis of metastatic cancer is very stressful and, at times, difficult to bear. Patients and their families are encouraged to talk about the way they are feeling with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group.

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’s 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 does return 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).

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

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

If treatment fails

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

Patients who have advanced cancer and who are expected to live less than 6 months may want to consider a type of palliative care called 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 think about where you would be most comfortable: at home, in a hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative 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.

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. Or, use the menu to choose another section to continue reading this guide.  

Bile Duct Cancer (Cholangiocarcinoma) - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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

What are clinical trials?

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

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Patients who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

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. There are also clinical trials studying ways to prevent cancer.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, 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. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating bile duct cancer. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with bile duct cancer.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different than the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. 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 patients 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 the patient chooses 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 a lot of 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.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of cancer. Or, use the menu to choose another section to continue reading this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu.

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 diagnostic and treatment options best for you.

A major focus of bile duct cancer research is finding out whether new drugs that work differently than standard chemotherapy might work better for advanced biliary tract cancer.

Examples of areas of research for bile duct cancer include:

  • 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 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.

  • Immunotherapy. Immunotherapy, also called biologic therapy, is designed to boost the body’s natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function.

  • Hyperthermia therapy. Hyperthermia therapy destroys cancer cells by increasing body temperature. It also may make cancer cells more likely to be destroyed by radiation therapy and chemotherapy.

  • 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.

  • Genetics. Scientists are also researching the genetic progression of bile duct cancer, which is the process of 1 genetic change turning into many genetic changes that cause a cell to become cancerous.

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

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding 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 in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.  

Bile Duct Cancer (Cholangiocarcinoma) - Coping With Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu.

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

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. Doctors call this part of cancer treatment “palliative 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 Treatment Options 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.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment 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.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. 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.

Coping with financial effects

Cancer treatment can be expensive. It is often a big 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 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. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with 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.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

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 are likely to happen?

  • What can we do to prevent or relieve them?

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

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of checkups after cancer treatment is finished. Or, use the menu to choose another section to continue reading this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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

Care for people diagnosed with cancer doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, 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. Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. 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. Or you may develop another tumor, called a secondary tumor.

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 also 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 originally diagnosed and the types of treatment given.

Researchers are studying ways to prevent both recurrences and the development of secondary tumors, but there is no standard preventive treatment at this time.

Watching for stent or bypass problems

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

  • Jaundice becomes worse, becoming a deeper yellow

  • Jaundice recurs 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 experience 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. In addition, other side effects called late effects may develop months or even years afterwards. 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.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may also 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 ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, 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 him or her, as well as 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. Or, use the menu to choose another section to continue reading this guide.  

Bile Duct Cancer (Cholangiocarcinoma) - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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

What is survivorship?

The word “survivorship” 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 includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having cancer. This is because it is different for everyone.  

Survivors may experience a mixture of strong 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 of how to cope with everyday life.

Survivors may feel some stress when frequent visits to the health care team end following 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 as new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality 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, and

  • 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 center where you received treatment.

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 in this article.

A new perspective on your health

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

In addition, it is important to have recommended medical checkups and tests (see Follow-up Care) to take care of your health. Cancer rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical 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 and productive as possible.

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

Looking for More Survivorship Resources?

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

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your cancer care team. Or, use the menu to choose another section to continue reading this guide.

Bile Duct Cancer (Cholangiocarcinoma) - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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

Talking often with the doctor 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, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

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 clinical trials are available for me? Where are they located, and how do I find out more about them?

  • 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’m worried about managing the costs of cancer care, who can help me?

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

  • Whom should I call with questions or problems?

  • Is there anything else I should be asking?

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?

  • What are the possible long-term 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 treatment?

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

  • What can be done to relieve the side effects?

Questions to ask about having chemotherapy

  • What type of chemotherapy 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 treatment?

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

  • What can be done to 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 I need them?

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

  • 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 some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide.  

Bile Duct Cancer (Cholangiocarcinoma) - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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. To go back and review other pages, use the menu.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both 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.

Beyond this guide, 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. Use the menu to select another section to continue reading this guide.