Medical exam: The first step in diagnosis is to do a physical exam and take your complete medical history. If hepatobiliary cancer is suspected, your doctor will check:

  • Your abdomen for masses, tenderness, or fluid buildup
  • Your skin and the whites of your eyes for a yellowish color that would suggest jaundice
  • The skin on your collarbone for lumps that could indicate cancerous cells in your lymph nodes

If the physical exam and/or symptoms suggest you might have cancer, your doctor will order more tests. Below is an overview of the possible tests.

Blood tests: Your doctor will be looking for the amount of bilirubin in your blood. This is the chemical that gives bile its yellow color. If you have problems in your gallbladder or liver, the level of bilirubin may increase. This is what can cause yellow skin or eyes.

Your doctor will be testing your blood for other substances, such as:

  • Albumin: evaluates liver function
  • Alpha-fetoprotein (AFP): used to detect liver cancer
  • Alkaline phosphatase: released by damaged liver cells
  • AST (aspartate aminotransferase): tests for liver damage
  • ALT (alanine aminotransferase): tests for liver damage
  • GGT (gamma-glutamyl transpeptidase): used to detect liver disease and bile duct obstruction

Any of these may be abnormally high if you have liver or gallbladder disease.

Tumor markers: These are proteins found in the blood when specific cancers are present. CEA and CA 19-9 are tumor markers for hepatobiliary cancers. High levels of these substances in your blood can indicate hepatobiliary cancer. However, keep in mind that other cancers or health conditions can cause the CEA and CA 19-9 levels to be high.

Imaging tests: These use X-rays, magnetic fields, or sound waves to create pictures of the inside of your body. Your doctor may want an imaging test to:

  • Help find a suspicious area that might be cancerous
  • Help a doctor guide a biopsy needle into a suspicious area to take a sample
  • Learn how far cancer may have spread
  • Help guide certain types of treatments
  • Help determine if treatment has been effective
  • Look for a possible recurrence of the cancer

An ultrasound is usually the first imaging test done. This test uses a small instrument called a transducer. It is shaped like a wand. The transducer sends out sound waves. The sound waves bounce off your internal organs, and the transducer picks up their echoes. A computer converts these echoes into a black and white image that is displayed on a screen. Most tumors release echoes that are different from normal tissue echoes. Your doctor can use this pattern of echoes to help locate tumors. Also, he or she can figure out how far the tumors may have grown or spread.

An ultrasound uses no radiation. You lie down on a table, and your skin is lubricated with gel. Then the doctor or technician moves the transducer along the skin over your upper right abdomen.

Endoscopic or laparoscopic ultrasound: These special kinds of ultrasounds put the ultrasound transducer inside your body. This puts it closer to your organs, and the doctor can get more detailed pictures.

Here’s how it works. The transducer is on the end of a thin, lighted tube. This tube has an attached device called an endoscope or laparoscope. Your doctor will put the tube through your mouth and down your stomach. A laparoscopic ultrasound requires a surgical cut in your belly for the transducer to be inserted.

If your doctor finds a tumor, the ultrasound will tell if the tumor has invaded your surrounding organs. If it has, then the ultrasound will tell how far.

CT scan (CAT scan or computed tomography): This type of scan produces detailed pictures of your body. Instead of taking one picture, like a regular X-ray does, a CT scanner takes many pictures. It does this by rotating around you while you lie on a table. Then a computer combines all these images. That produces a 3-dimensional picture.

Before any pictures are taken, you may have to drink 1 to 2 pints of a liquid. It is called oral contrast. This fluid helps outline your intestine. This helps the doctor identify tumors. You may also receive an IV (intravenous line) in your arm or hand. A different type of contrast dye can be injected through the IV. Its purpose is also to outline structures in your body.

A special type of CT known as CT angiography can be used to look at the blood vessels near your liver, gallbladder, and/or bile duct. This tells your doctor if surgery is a good option.

MRI (magnetic resonance imaging): An MRI scan provides detailed pictures like CT scans. The difference is that MRI scans use radio waves and strong magnets instead of X-rays. The energy from the radio waves produces patterns. A computer takes these and turns them into detailed images of specific parts of your body.

MRI scans are helpful in looking at your gallbladder, nearby bile ducts, liver, and other organs. Sometimes they can help tell a benign tumor from a malignant one.

There are 2 special kinds of MRIs used to diagnose hepatobiliary cancer:

  • MR cholangiopancreatography (MRCP) is used to look at the bile ducts.
  • MR angiography (MRA) is used to look at the blood vessels.

MRI scans are often little more uncomfortable than CT scans. For one thing, an MRI takes up to an hour. You may be placed inside a narrow tube. This can feel confining. There are newer, open MRI machines in many hospitals and clinics around the country.

PET scan (positron emission tomography): This scan requires a special radioactive sugar to be injected in your vein. The cancerous tissues then take up the sugar. That enables a scanner to easily see those areas. PET scans are useful for finding cancer that has spread.

Cholangiography: Another type of imaging test is a cholangiogram. This test looks at the bile ducts to see if they are blocked, dilated, or narrowed. A cholangiogram is often used to plan a surgery. There are 3 types of cholangiograms:

  • Magnetic resonance cholangiopancreatography (MRCP): This uses a standard MRI machine. It does not require an IV of a contrast agent.
  • Endoscopic retrograde cholangiopancreatography (ERCP): In an ERCP, your doctor puts a long, flexible tube called an endoscope down your throat. The tube goes through your esophagus and stomach and into the first part of your small intestine. A small tube goes from the end of the endoscope into the common bile duct. A small amount of contrast dye is injected through this tube. This fluid outlines the bile and pancreatic ducts. Then X-rays are taken. These images can reveal narrowing or blockage of the bile ducts. The benefit to an ERCP is that your doctor can take samples of cells or fluid.
  • Percutaneous transhepatic cholangiography (PTC): In a PTC, your doctor puts a thin needle through the skin of your abdomen and into a bile duct in your liver. You will be given an IV line before the procedure. You’ll be given medicine to make you sleepy through the IV. Your doctor will also rub a local anesthetic on your abdomen to numb it. A contrast dye will be injected through the needle. As this fluid travels through the bile ducts, X-rays are taken.

Angiography: This X-ray test looks at blood vessels. A small amount of contrast dye is injected into an artery. A local anesthetic is used to numb the area before the catheter is inserted. Then the dye is quickly injected to outline all the vessels. This outlines blood vessels while X-ray images are taken. These images show doctors if blood flow in an area is blocked. These X-rays also show any abnormal blood vessels in the area. Angiography can show whether a gallbladder cancer has grown through the walls of blood vessels. All this information helps your surgeon decide if a cancer can be removed.

Laparoscopy: In this test, the doctor inserts a thin tube with a light and a small video camera on the end. This instrument is called a laparoscope. It is inserted through a small incision (cut) in the front of your abdomen. This device enables your doctor to look at your gallbladder, liver and other organs. This test is done in the operating room. You will be given general anesthesia.

Laparoscopy can help your doctor plan your surgery or other treatments. It is also useful in determining how advanced your cancer is.

Laparoscopy is often also used to remove the gallbladder to treat gallstones or chronic inflammation of the gallbladder. This operation is called a laparoscopic cholecystectomy. Sometimes the surgeon finds or suspects gallbladder cancer during that operation. If this happens, the surgeon will do an open cholecystectomy. This is also a removal of the gallbladder but it involves a larger cut in your abdomen. This opening lets the surgeon see more. It can reduce the chance of releasing cancer cells into your abdomen.

Biopsy: During a biopsy, your doctor removes a small piece of tissue from the area that looks suspicious. Then the tissue is examined under a microscope. The goal is to determine:

  • If cancer cells are present and if so,
    • What type of cancer cells they are.
Types of Biopsies
  • Needle biopsy : In a needle biopsy, a thin, hollow needle is inserted through your skin and into the tumor. Your skin will be numbed ahead of time with a local anesthetic. The needle is usually guided by ultrasound or CT scans. When the images show that the needle is in the tumor, a sample is drawn into the needle. This sample is then examined under a microscope.

Usually this is done as a fine needle aspiration (FNA) biopsy. FNA uses an extremely thin needle that is attached to a syringe. It can be done as a core needle biopsy, which uses a slightly larger needle.

  • Laparoscopic surgery: The surgeon makes a few small incisions (cuts) in your abdomen. Then he or she inserts a very thin, tube with a light. It is called a laparoscope. This instrument has a tool on the end to remove tissue.
  • Open surgery: The surgeon makes a regular, large incision and removes the tissue. In this case, the surgeon will probably try to remove the entire tumor as well as some healthy tissue to help ensure all of the cancer is removed.

Once cancer has been diagnosed, it’s important to know what stage of cancer you have. Knowing what stage your cancer is tells you how serious it is. The stage of cancer depends on the size of the cancer, lymph node involvement and if there is any spread of the tumor. It helps your doctor plan the right course of treatment.

The TNM (tumor, lymph node, and metastasis) staging system is used for all types of cancer. The letters TNM describe the amount and spread of cancer in your body.

  • T: indicates how big the tumor is
  • N: indicates number of lymph nodes with cancer cells in them
  • M: indicates metastasis, which means that cancer has spread to other body parts

Stages are usually labeled using Roman numerals 0 through IV (0-4). Higher numbers mean cancer has spread and the cancer is more advanced.

Liver Cancer Stages

Stage I - The tumor is only in the liver

Stage II - There are cancer cells in the blood vessels or there is more than one small (<5cm) tumor in the liver

Stage III - At least one tumor is >5cm or the cancer has spread outside of the liver to nearby organs or lymph nodes

Stage IV - The cancer has spread to distant parts of the body such as the lungs

If you have liver tumors that are metastases from another primary cancer, your stage will depend on your primary diagnosis. However, metastasis usually means the cancer is stage IV.

Gallbladder Cancer Stages

Stage 0 - The cancer cells are only found in the inner layer of the gallbladder

Stage I - The cancer has spread to a layer of tissue or muscle within the gallbladder

Stage II - The cancer has spread to the connective tissue around the muscle of the gallbladder

Stage IIIA - The cancer has spread to the tissue that covers the gallbladder or to a nearby organ

Stage IIIB - Similar to Sage IIIA, but the cancer has also spread to nearby lymph nodes

Stage IVA - The cancer has spread to a main blood vessels in the liver or to 2 or more nearby organs

Stage IVB - The cancer has spread to more distant organs or lymph nodes

Bile Duct Cancer Stages

Stage 0 - The cancer is only in the innermost layer of the bile duct

Stage II - The cancer has spread into nearby fat or liver tissue

Stage IIIA - The cancer has spread to nearby organs but has not spread to the lymph nodes

Stage IIIB - The cancer has spread to nearby lymph nodes

Stage IVA - The cancer has spread to lymph nodes and main blood vessels

Stage IVB - The cancer has spread to distant organs or lymph nodes

There are 3 main ways that cancer spreads in your body. It can spread through:

  • Tissue: Cancer invades nearby normal tissue
  • Lymph system: Cancer invades your lymph system and travels through your lymph vessels to other parts of your body
  • Blood: Cancer invades your veins and capillaries and travels through your bloodstream to other parts of your body

The original tumor is called the primary tumor. When cancer cells break away from it and travel to other places in your body, a secondary tumor can form. The name for this spreading process is metastasis.

Cancer cells can break away from the original tumor. This allows them to spread. Cancer cells can spread in 3 ways:

  • By entering blood vessels
  • By invading lymph nodes
  • By attaching to other tissues and growing to form new tumors

The secondary tumor is the same kind of cancer as the primary tumor. For instance, if the cancer cells in your gallbladder travel to your liver, it is called metastatic gallbladder cancer. It is not liver cancer.

The first step on the cancer treatment journey is to find an oncologist (medical or surgical) who inspires trust. You may want to discuss this with your nurse navigator. It may seem overwhelming to choose an oncologist. First, start with referrals from your primary care physician, specialist, or insurance carrier. Talk to family and friends who may have recommendations.

Here are some things to consider when choosing an oncologist:

  • Is the oncologist board certified?
  • How much experience does he or she have in treating liver, gallbladder, or bile duct cancer?
  • Do you feel comfortable talking with this doctor? Does he or she listen well?
  • Is the staff compassionate? Is the environment a good one or do you feel rushed?
  • What hospital(s) does this oncologist see patients in?
  • What are the office hours?
  • What if you have an emergency? Can you call?
  • Can this doctor be contacted after hours?

You will be spending a lot of time with the oncologist, nurses, and technicians, so it’s important to feel comfortable with them.

Questions for Your Healthcare Team

If you’ve just been diagnosed with cancer, you may be confused and overwhelmed. You probably want answers, but you may not even know what questions to ask. As a cancer patient, being able to talk openly and honestly with your healthcare team is very important.

When you first meet with your doctor, it can be helpful to bring someone else with you. That way, there’s someone else to hear what is said and to ask questions or take notes. Here are some other tips for talking with your doctor:

  • Write out your questions ahead of time.
  • Write down the answers your doctor gives you.
  • If you don’t understand something, ask your doctor to say it in a different way. It’s important that you understand, and you have a right to know.

Use these must-ask questions as a guide to start talking with your healthcare team.

What is my diagnosis?

This question may seem like a no-brainer, but in the rush of appointments, you may not receive a clear answer.  If you are unsure of your diagnosis, ask your oncologist. Sometimes more specific tests are needed to make an exact diagnosis. When dealing with hepatobiliary tumors, it is important to know whether your liver, gallbladder, or bile duct tumor is primary cancer or a metastasis.

What is my prognosis? What stage is my cancer?

Knowing your prognosis can help you better prepare for the future and select your best treatment plan. In order to know the stage of your cancer, your doctor will need to do tests. These may include scans, genetic testing, and/or a biopsy. The answer to these questions may be difficult to hear. You may consider having a family member or friend with you at this appointment.

What are my treatment options? What would you recommend?

Ask your oncologist to explain all your treatment options, including possible side effects and cost. Ask your oncologist which treatment he or she recommends. Also, ask your doctor what the goal of your treatment is—palliative or curative. If you are unsatisfied with your options, do not be afraid to seek a second opinion.

Am I eligible for a clinical trial?

Clinical trials help improve the standard of care for all cancer patients. Based on your situation, a clinical trial may also be your best treatment option. Each trial has its own eligibility requirements.

What are the possible short-term and long-term side effects of treatment? How will these affect my normal activities?

Always ask about short-term and long-term side effects before beginning treatment so you are prepared. You should also consider short-term and long-term side effects when deciding which treatment plan is best for you.

How can I manage these side effects?

Some side effects can be easily managed through diet, exercise, or over-the-counter medication. Other side effects may require prescription medication, occupational therapy, or physical therapy which your oncologist can prescribe as needed.

Will my ability to have children be affected? Is there anything I can do to preserve my fertility?

Some cancers and cancer treatments can affect your fertility, but you do have options. Before treatment, you may be able to freeze eggs or bank sperm. There may be steps you can take during treatment to protect your reproductive system as well. For more information, visit Fertile Hope at http://www.fertilehope.org/.

Where can I find help with financial concerns?

Evaluate your financial situation as soon as possible. You will not want to deal with financial stress in the middle of treatment when you may not feel well. For help finding financial assistance, contact CancerCare at (800) 813-HOPE or call 211 to reach your local United Way resource hotline.

Where can I find help with lodging or transportation?

When beginning cancer treatment, planning ahead is key. Some treatment centers have lodging coordinators or social workers to help you with the logistics of treatment. Ask your nurse navigator for assistance if you are having trouble finding lodging or transportation.

What will my follow-up care plan include?

After you finish treatment, make sure you and your oncologist create a follow-up care plan. You may need to check for recurrence. You may also need follow-up care for long term side effects.

When can I call myself a survivor?

According to the National Cancer Institute’s definition of a cancer survivor, “a person is considered to be a survivor from the time of diagnosis until the end of life.”

Specific Questions To Ask Your Doctor

  • What type of cancer do I have—liver, gallbladder, bile duct?
  • What is the stage of my cancer?
  • If I have a liver tumor, is it primary liver cancer or metastasis?
  • What does my pathology report say? Can I have a copy of the pathology report?
  • Will I need more tests?
  • Can my cancer be removed with surgery?
  • What are my treatment options?
  • What are the potential side effects of each treatment option?
  • Is there one treatment you recommend over the others?
  • How will my treatment affect my daily life?
  • How much time can I take to make my decision about cancer treatment?
  • Should I seek a second opinion?
  • Should I see a specialist? What will that cost, and will my insurance cover it?
  • What would we do if the treatment doesn’t work or the cancer returns?
  • What type of follow-up care will I need after treatment?