If You Have Bile Duct Cancer

What is bile duct cancer?

Cancer can start anywhere in the body. Bile duct cancer starts when cells in the bile ducts start to grow out of control and crowd out normal cells. This makes it hard for the body to work the way it should.

Cancer cells can spread to other parts of the body. Cancer cells in the bile ducts can sometimes travel to the lungs and grow there. When cancer cells do this, it’s called metastasis. To doctors, the cancer cells in the new place look just like the ones from the bile ducts.

Cancer is always named for the place where it starts. So when bile duct cancer spreads to the lungs (or any other place), it’s still called bile duct cancer. It’s not called lung cancer unless it starts in the lungs.

Ask your doctor to use this picture to show you where the cancer is.

The bile ducts

The bile ducts are thin 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 gallbladder. It helps you digest fats in food.

Are there different kinds of bile duct cancer?

• Intrahepatic bile duct cancers start in the bile ducts that are inside the liver.
• Perihilar bile duct cancers are in the ducts where they come out of the liver.
• Distal bile duct cancers are close to where the ducts join with the small intestine.

Questions to ask the doctor

• Why do you think I have cancer?
• Is there a chance I don’t have cancer?
• Would you please write down the kind of cancer you think I might have?
• What will happen next?

How does the doctor know I have bile duct cancer?

It's hard to find bile duct cancer early, when it's small and hasn't spread. Because the bile ducts are deep inside the body, the doctor can’t see or feel them during a physical exam. Most of the time, these cancers aren't found until they cause problems that make a person go to a doctor.

The doctor will ask questions about your health and perform a physical exam. If signs are pointing to bile duct cancer, more tests will be done.

Tests that may be done

Blood tests: Blood tests can be used to help find out how much bilirubin is in the blood. Bilirubin is the chemical that gives the bile its yellow color. Problems in the gallbladder, bile ducts, or liver can cause a high bilirubin level. Other blood tests can show how well the liver is working.

Ultrasound: For this test, a small wand is moved around on your skin. It gives off sound waves and picks up the echoes as they bounce off tissues. The echoes are made into a picture on a computer screen. This test is often the first test used to look at the liver and bile ducts.

Endoscopic ultrasound or EUS for short This test uses sound waves to make pictures of the inside of the body. To do this test, a small probe is placed on the tip of a thin tube that is passed down the throat into the stomach and then into the first part of the small intestine. The probe can be pointed at the bile ducts. It can also be used to take out a little bit of tissue that can be checked for cancer.

CT or CAT scan: Uses x-rays to make pictures of your insides. This can show clear pictures of the bile ducts and the area around it to see if the cancer has spread.

MRI scan: Uses radio waves and strong magnets instead of x-rays to make clear pictures of the inside of the body. This test may be used to learn more about the cancer’s size and spread. Special types of MRI scans can also be used to look at the organs and blood vessels around the bile ducts.

Cholangiogram: This test looks at the bile ducts to see if they are blocked, narrowed, or widened. It can be used to help plan surgery (SUR-jur-ee). There are many types of cholangiograms, and each has different pros and cons.

Laparoscopy: For this type of surgery, a thin, lighted tube is put into the belly through a small cut in the skin. A tiny camera on the end of the tube lets the doctor look at the gallbladder and other nearby body parts. This can help plan surgery or other treatments. A biopsy may be done with tools put into the tube.

Biopsy: The doctor takes out a little bit of tissue or some cells to check for cancer. A biopsy is the only way to tell for sure if you have cancer. Biopsies can be done in more than one way. Ask your doctor which type of biopsy you will have. Each type has pros and cons.

Questions to ask the doctor

• What tests will I need to have?
• Who will do these tests?
• Where will they be done?
• Who can explain them to me?
• How and when will I get the results?
• Who will explain the results to me?
• What do I need to do next?

How serious is my cancer?

If you have bile duct cancer, the doctor will want to find out how far it has spread. This is called staging. You may have heard other people say that their cancer was stage 2 or stage 3. Your doctor will want to find out the stage of your cancer to help decide what type of treatment is best for you.

Your cancer can be staged 1, 2 ,3 or 4. The lower the number, the less the cancer has spread. Be sure to ask the doctor about the cancer stage and what it means for you.

Questions to ask the doctor

• Do you know the stage of the cancer?
• If not, how and when will you find out the stage of the cancer?
• Would you explain to me what the stage means in my case?
• Based on the stage of the cancer, how long do you think I’ll live?
• What will happen next?

What kind of treatment will I need?

Most people with bile duct cancer find out that it's a higher stage and hard to treat. Treatment in many cases helps make symptoms better and slows down the cancer but may not cure it. Talk with your doctor to find out your options. The main ways to treat bile duct cancer are surgery (SUR-jur-ee), radiation (RAY-dee-A-shun) therapy, and chemotherapy (KEY-mo-THAIR-uh-pee). Ask your doctor what treatments can help you and what the goal is.

The treatment plan that’s best for you will depend on:

• The stage of the cancer
• The chance that a type of treatment will cure the cancer or help in some way
• Your age
• Other health problems you have
• Your feelings about the treatment and the side effects that come with it

Surgery

Surgery is used to try to take out all of the cancer. If the cancer has spread, surgery may not be possible. There's more than one way to do surgery. Ask your doctor what kind of surgery you will have, the goal of the surgery, and what you can expect.

Side effects of surgery

Surgery for bile duct cancer is often a very big operation and can have risks and side effects. Be sure to ask the doctor what you can expect. If you have problems, let your doctors know. Even in the best cases you can have problems from surgery. They include:

• Leaking inside the body
• Infections
• Bleeding
• Trouble eating (may need to take medicine to help)
• Weight loss
• Liver failure

Radiation therapy

Radiation uses high energy x-rays to kill cancer cells. Radiation (along with chemotherapy) can be used when the cancer is too far along to be taken out by surgery. It can also be used before surgery to try to shrink a tumor so it can be taken out. It might be used after surgery, also, to kill any cancer cells that may have been missed. Radiation is often used to help make symptoms better – such as to ease pain or blockages caused by large tumors.

Side effects of radiation treatments

If your doctor suggests radiation treatment, talk about what side effects might happen. The most common side effects of radiation are:

• Skin changes where the radiation is given
• Feeling very tired
• Feeling sick to your stomach
• Losing weight

Most side effects get better after treatment ends. Some might last longer. Talk to your cancer care team about what you can expect.

Chemo

Chemo (chemotherapy), the use of drugs to fight cancer. These drugs go into the blood and spread through the body. Chemo is given in cycles or rounds. Each round of treatment is followed by a break to allow your body to get better from the side effects. Your doctor can pick from more than one chemo drug. Chemo might be used before or after surgery. It also can be used to help shrink tumors and ease problems they're causing.

Side effects of chemo

Common side effects are:

• Feeling very tired
• Feeling sick to your stomach
• Hair loss
• Mouth sores
• Low blood counts

There are ways to treat most chemo side effects. If you have side effects, be sure to talk to your cancer care team so they can help.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments in people. They compare standard treatments with others that may be better.

If you would like to learn more about clinical trials that might be right for you, start by asking your doctor if your clinic or hospital conducts clinical trials. See Clinical Trials to learn more.

Clinical trials are one way to get the newest cancer treatment. They are the best way for doctors to find better ways to treat cancer. If your doctor can find one that’s studying the kind of cancer you have, it’s up to you whether to take part. And if you do sign up for a clinical trial, you can always stop at any time.

What about other treatments that I hear about?

When you have cancer you might hear about other ways to treat the cancer or treat your symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, special diets, and other things. You may wonder about these treatments.

Some of these are known to help, but many have not been tested. Some have been shown not to help. A few have even been found to be harmful. Talk to your doctor about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

• What treatment do you think is best for me?
• What’s the goal of this treatment? Do you think it could cure the cancer?
• Will treatment include surgery? If so, who will do the surgery?
• What will the surgery be like?
• Will I need other types of treatment, too?
• What’s the goal of these treatments?
• What side effects could I have from these treatments?
• What can I do about side effects that I might have?
• Is there a clinical trial that might be right for me?
• What about special vitamins or diets that friends tell me about? How will I know if they are safe?
• How soon do I need to start treatment?
• What should I do to be ready for treatment?
• Is there anything I can do to help the treatment work better?
• What’s the next step?

What will happen after treatment?

With bile duct cancer, treatments may not cure your cancer. You may need to keep getting treatment and care. From time to time tests will be done to see how your treatment is working, and at other times tests will be done to see if your cancer has come back. Ask your doctor what to expect. No matter what, your doctors will still want to watch you closely. Be sure to go to all of these follow-up visits. During these visits, your doctors will ask about symptoms, do physical exams, and may order blood tests or tests that take pictures, such as CT scans.

Having cancer and dealing with treatment can be hard, but it can also be a time to look at your life in new ways. Call us at 1-800-227-2345 or talk to your cancer care team to find out what you can do to feel better.

You can’t change the fact that you have cancer. What you can change is how you live the rest of your life.