If You Have Small Intestine Cancer

What are small intestine cancers?

Cancer can start any place in the body. Cancer that starts in the small intestine is often called small intestine cancer. It starts when cells in the small intestine grow out of control and crowd out normal cells. This makes it hard for the body to work the way it should.

Cancer cells in the small intestine can sometimes spread to other parts of the body, like the liver, and grow there. When cancer cells do this, it’s called metastasis (pronounced meh-TAS-tuh-sis). To doctors, the cancer cells in the new place look just like the ones from the small intestine.

Cancer is named for the place where it starts. So when small intestine cancer spreads to the liver (or any other place), it’s still called small intestine cancer. It’s not called liver cancer unless it starts from cells in the liver.

The small intestine

The small intestine is part of the digestive system. This is where food is broken down to make energy and where the body gets rid of solid waste (poop or stool). 

The small intestine is a long, hollow tube. It is attached to the stomach on one end, and to the large intestine on the other end. As food travels through the small intestine, it absorbs most of the nutrients from the food and into our bodies. 

Different kinds of small intestine cancers

There are 4 main types of small intestine cancers, which start in different kinds of cells. 

The type we’re talking about here is called adenocarcinoma (AD-uh-no-KAR-sin-O-muh). This type starts in the gland cells that line the inside of the small intestine. Other types of cancer that can start in the small intestine are:

• Gastrointestinal (GI) carcinoid tumor
• Gastrointestinal stromal tumor (GIST)
• Non-Hodgkin lymphoma

These other types behave and are treated differently, so they are discussed on other pages. It’s important to know which type you have. If you’re not sure, ask your doctor.

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?
• Where is the cancer?
• What will happen next?

How does the doctor know I have a small intestine cancer?

The symptoms of small intestine cancer can include belly pain, throwing up, weight loss, feeling tired, or having dark colored stools (poop). Your doctor will ask questions about your symptoms and do a physical exam.

If your doctor thinks you might have a small intestine cancer (or some other type of cancer), more tests will be done. Here are some of the tests you might need:

Blood tests: Certain blood tests can tell the doctor more about your health.

Barium x-ray tests: Different types of x-ray tests can be used to look at the inside of your intestines. For these tests, you either swallow a chalky liquid, it is put into your intestines through a tube put down your throat, or it is put in through your rectum. The barium in the liquid outlines the inner lining of the intestines on x-rays. These types of tests aren’t used as much as they were in the past.

CT scan: This test uses x-rays to make detailed pictures of the inside of your body. CT scans can often show the size, shape, and place of tumors in the intestines. This test might also be done to see if cancer has spread.

MRI scan: MRIs use radio waves and strong magnets instead of x-rays to make very detailed pictures of the inside of your body. MRIs can make it easier to see the size and shape of the tumor.

Endoscopy (end-AH-skuh-pee): For these tests, the doctor puts a flexible lighted tube with a tiny video camera on the end into the body to see the inner lining of the GI tract. Depending on where the tumor is thought to be, the tube can be put down the throat (for an upper endoscopy) or put into the rectum. If abnormal areas are seen, small samples can be taken out for a biopsy (see below). Another option might be to swallow a capsule with a tiny camera in it, which takes pictures as it goes through the small intestine.

Biopsy (BY-op-see): In a biopsy, the doctor takes out small pieces of an abnormal area to check for cancer cells. This is the best way to know for sure if you have cancer. If cancer is found, lab tests will also be done to find out what type of cancer it is. 

There are different ways to do a biopsy. It can be done during endoscopy or surgery, or sometimes using a thin, hollow needle to get biopsy samples. The type used will depend on the size of the tumor and where it is. Ask your doctor what kind you will need.

If a small intestine cancer is found, tests might be done on the biopsy samples to see if the cancer cells have certain gene changes. This might affect your treatment.

Questions to ask the doctor

• What tests will I need?
• Who will do these tests?
• Where will they be done?
• 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 small intestine cancer, the doctor will want to find out how far it has spread. This is called the stage of the cancer. Your doctor will want to find out the stage to help decide what type of treatment is best for you.

The stage is based on how much the cancer has grown through the layers of the wall of the intestine, as well as if the cancer has grown into nearby areas or spread to organs farther away.

Your cancer can be stage 0, 1, 2, 3, or 4. The lower the number, the less the cancer has spread. A higher number, like stage 4, means a more serious cancer that has spread from where it first started. Ask the doctor about the cancer stage and what it means for you.

When trying to decide on treatment, doctors often use a simpler system that divides small intestine cancers into 2 main groups:

• Resectable tumors: those that can be removed with surgery
• Unresectable tumors: those that can’t be removed with surgery

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?
• How does the stage of the cancer affect my treatment options?
• What will happen next?

What kind of treatment will I need?

The main types of treatment are surgery, chemotherapy, and radiation. Sometimes newer types of treatment might be options as well. Two or more types of treatment may be used at the same time, or they may be given one after the other. 

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

• The stage of the tumor and where it is
• If the tumor can be removed safely with surgery
• The chances of the tumor coming back after treatment
• Your age and overall health
• Your feelings about the treatment and the side effects that can come with it

Surgery

Surgery is the main treatment for small intestine cancers if it can be done. The type of surgery depends on where the tumor is and the goal of the surgery. If the doctor thinks all of the tumor can be removed, surgery is used to take out the tumor and a margin or edge of the healthy tissue around it. But even if not all of the tumor can be removed, surgery is sometimes done to help prevent or relieve problems caused by the cancer. Ask your doctor what kind of surgery you will need and what to expect.

Side effects of surgery

Surgery can have risks and side effects, such as bleeding, infections, and changes in how you’re able to eat. Ask the doctor what you can expect. If you have problems, let your doctors and nurses know. They can help you with any problems that come up.

Chemo

Chemotherapy (KEY-mo-THAIR-uh-pee), or chemo for short, is the use of certain types of drugs to fight cancer. The drugs are often given through a needle into a vein or taken as pills. These drugs go into the blood and spread through the body.

Sometimes chemo can be given directly into the belly during surgery, which might help limit its side effects.

Chemo is given in cycles or rounds. Each round of treatment is followed by a break. Most of the time, 2 or more chemo drugs are given. Treatment often lasts for many months.

Chemo can be given after surgery to try to lower the chance that the cancer will come back. It can also be used as the main treatment for advanced cancer.

Side effects of chemo

Chemo can make you feel very tired, sick to your stomach, and cause your hair to fall out. But these problems tend to go away after treatment ends. Some chemo drugs can cause other side effects as well. Ask your cancer care team what you can expect.

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

Radiation treatments

Radiation therapy uses high-energy rays (like x-rays) to kill cancer cells. After surgery, radiation can be used to try to kill areas of cancer that could not be removed. Radiation can also be used to ease some problems caused by the cancer.

Radiation for small intestine cancer is aimed at the tumor from a machine outside the body. This is called external beam radiation.

Side effects of radiation treatments

If your doctor suggests radiation treatment, talk about what side effects might happen. Side effects depend on the area being treated. Some common side effects of radiation are:

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

Most side effects get better after treatment ends. Talk to your cancer care team about what you can expect during and after treatment.

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.

Clinical trials are one way to get the newest cancer treatments. They are the best way for doctors to find better ways to treat cancer. But they might not be for everyone. 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.

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.

What about other treatments I hear about?

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

Some of these might 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 cancer care team about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

• Will I need to see any other types of doctors?
• 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?
• How will my body look and work after surgery?
• Will I need other types of treatment, too?
• What will these treatments be like?
• 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 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?

You’ll be glad when treatment is over. But it’s hard not to worry about cancer coming back. Even when cancer never comes back, people still worry about it. 

It’s important to keep seeing your cancer doctor. Be sure to go to all of your follow-up visits. Your doctor will ask about symptoms, do physical exams, and may do blood tests or other tests to see if the cancer has come back. At first, your visits may be every few months. Then, the longer you’re cancer-free, the less often the visits are needed.

Having cancer and dealing with treatment can be hard, but it can also be a time to look at your life in new ways. You might be thinking about how to improve your health. 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 had cancer. What you can change is how you live the rest of your life – making healthy choices and feeling as good as you can.