What is bile duct cancer?

Cancer starts when cells change (mutate) and grow out of control. The changed (abnormal) cells often grow to form a lump or mass called a tumor. Cancer cells can also grow into (invade) nearby areas. They can spread to other parts of the body, too. This is called metastasis.

Bile duct cancer is rare. It starts in the cells that make up your bile ducts. The bile ducts are a network of tiny tubes that connect the liver and the gallbladder to the small intestine. They carry a fluid called bile. Bile is made in the liver and stored in the gallbladder. It's used in the intestines to break down fat in food.

Who is at risk for bile duct cancer?

A risk factor is anything that may increase your chance of having a disease. The exact cause of someone’s cancer may not be known. But risk factors can make it more likely for a person to have cancer. Some risk factors can't be controlled. But others may be things you can change.

The risk factors for bile duct cancer include:

• Infection with hepatitis B or C

• Being overweight or obese

• Older age

• A history of this cancer in family members

• A disease called primary sclerosing cholangitis (PSC)

• Chronic ulcerative colitis

• Inflammatory bowel disease

• Crohn’s disease

• Nonalcoholic fatty liver disease

• Liver fluke infection

• Bile duct cysts and stones

• Abnormal bile duct that allows bile to flow the wrong way

• Cirrhosis

• Exposure to certain chemicals most often used in automobile and rubber plants

Talk with your healthcare provider about your risk factors for bile duct cancer and what you can do about them.

Can bile duct cancer be prevented?

There's no sure way to prevent bile duct cancer. Some risk factors can be controlled or treated to help reduce risk.

What are the symptoms of bile duct cancer?

You can have bile duct cancer with no symptoms. Symptoms tend to start when the cancer is big or has spread. Common signs of bile duct cancer include:

• Yellow eyes and skin (jaundice)

• Itchy skin

• Belly pain

• Very dark urine

• Clay-colored, greasy stool

• Losing weight without trying

• You don’t feel like eating

• Upset stomach (nausea) and vomiting

• Fever

Many of these may be caused by other health problems. But it's important to see a healthcare provider if you have these symptoms. Only a healthcare provider can tell if you have cancer.

How is bile duct cancer diagnosed?

The symptoms of bile duct cancer tend to cause a person to get medical care. Your healthcare provider will ask you about your health history, your symptoms, risk factors, and family history of disease. A physical exam will be done with a focus on the belly. Blood tests will be done. You'll need some imaging tests, such as an ultrasound or CT scan, to look at the inside of your belly. 

Special scopes can be put into your body to get a closer look at the bile ducts. A scope is a long, thin, flexible tube with a camera on the end. It can be put in through your mouth or through a small cut in your skin on your belly. Tiny bits of tissue can be taken out through the scope. This is called a biopsy. The pieces of tissue are tested for cancer cells. This is the only way to know if you have bile duct cancer. The results come back in about 1 week.

After a diagnosis of bile duct cancer, you'll need more tests. These help your healthcare providers learn more about your overall health and the cancer. They're used to find out the stage of the cancer. The stage is how much cancer there is and how far it has spread (metastasized) in your body. It's one of the most important things to know when deciding how to treat the cancer.

Once your cancer is staged, your healthcare provider will talk with you about what the stage means for your treatment. Be sure to ask your healthcare provider to explain the details of your cancer to you in a way you can understand.

How is bile duct cancer treated?

Your treatment choices depend on the test results and the stage of the cancer. Other things to think about are if the cancer can be removed with surgery and your overall health. The goal of treatment may be to cure you, control the cancer, or help ease problems caused by the cancer. Talk with your healthcare team about your treatment choices, the goals of treatment, and what the risks and side effects may be.

Types of treatment for cancer are either local or systemic. Local treatments remove, destroy, or control cancer cells in one area. Surgery and radiation are local treatments. Systemic treatment is used to destroy or control cancer cells that may have traveled around your body. When taken by pill or injection, chemotherapy and targeted therapy are systemic treatments.

You may have just one type of treatment or a combination of treatments. Tests will be done during treatment to see how well it's working.

Bile duct cancer may be treated with:

• Surgery

• Radiation therapy

• Chemotherapy

• Targeted therapy

• Immunotherapy

Talk with your healthcare providers about your treatment options. Make a list of questions. Think about the benefits and possible side effects of each option. Talk about your concerns with your healthcare provider before making a decision.

What are treatment side effects?

Cancer treatments like chemotherapy and radiation can damage normal cells. This can cause side effects like hair loss, mouth sores, and vomiting. Talk with your healthcare provider about side effects linked with your treatment. There are often ways to manage them. There may be things you can do and medicines you can take to help prevent or control many treatment side effects.

Surgery for bile duct cancer is very complex. It can change the way your body works. Ask what you can expect to happen and what side effects you may have.

Coping with bile duct cancer

Many people feel worried, depressed, and stressed when dealing with cancer. Getting treatment for cancer can be hard on your mind and body. Keep talking with your healthcare team about any problems or concerns you have. Work together to ease the effect of cancer and its symptoms on your daily life.

Here are some tips:

• Talk with your family or friends.

• Ask your healthcare team or social worker for help.

• Speak with a counselor.

• Talk with a spiritual advisor, such as a minister or rabbi.

• Ask your healthcare team about medicines for depression or anxiety.

• Keep socially active.

• Join a cancer support group in person or online.

Cancer treatment is also hard on the body. To help yourself stay healthier, try to:

• Eat a healthy diet, with a focus on high-protein foods.

• Drink plenty of water, fruit juices, and other liquids.

• Keep physically active.

• Rest as much as needed.

• Talk with your healthcare team about ways to manage treatment side effects.

• Take your medicines as directed by your team.

When should I call my healthcare provider?

Your healthcare provider will talk with you about when to call. You may be told to call if you have any of the below:

• New symptoms or symptoms that get worse

• Signs of an infection, such as a fever

• Side effects of treatment that affect your daily function or don’t get better with treatment

Ask your provider what signs to watch for and when to call. Know how to get help after office hours and on weekends and holidays.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.