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Small Bowel Cancer - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 Small Bowel Cancer, also called Small Intestine Cancer. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

About the small bowel

The small bowel is part of the digestive system, and its function is to break down food and nutrients to be absorbed into the body. The small bowel is also called the small intestine. It links the stomach to the large intestine, which is called the colon. The small bowel is divided into three parts:

  • The duodenum. The part closest to the stomach

  • The jejunum. The middle portion

  • The ileum. The bottom section, which connects to the large intestine, or colon.

The small bowel is approximately 15 feet long, folds many times to fit inside the abdomen, and makes up three-quarters of the digestive system.

Small bowel cancer

Small bowel cancer starts when healthy cells in the lining of the small bowel change and grow uncontrollably, 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. A benign tumor means the tumor can grow but will not spread. These changes can take a long time to develop. Both genetic and environmental factors can cause such changes, although the specific causes of small bowel cancer are generally not well understood.

Types of small bowel cancer

There are five main types of small bowel cancer:

  • Adenocarcinoma. Adenocarcinoma is the most common type of small bowel cancer, usually occurring in the duodenum or jejunum. Adenocarcinoma begins in the gland cells of the small bowel.

  • Sarcoma. Small bowel sarcoma is generally a leiomyosarcoma, which is a tumor that arises in the muscle tissue that makes up part of the intestine. This type of tumor most often occurs in the ileum. Learn more about sarcoma.

  • Gastrointestinal stromal tumor (GIST). GIST is an uncommon tumor that is believed to start in cells found in the walls of the gastrointestinal (GI) tract, called interstitial cells of Cajal (ICC). GIST belongs to a group of cancers called soft tissue sarcomas. Learn more about gastrointestinal stromal tumors.

  • Carcinoid tumor. Carcinoid tumors are classified as neuroendocrine tumors. These are tumors that originate in the hormone-producing cells of various organs and generally occur in the ileum. Learn more about carcinoid tumors.

  • Lymphoma. Lymphoma is a cancer of the lymph system, which is part of the body’s immune system. Lymphoma that occurs in the small bowel usually occurs in the jejunum or ileum and is most commonly non-Hodgkin lymphoma. Learn more about non-Hodgkin lymphoma.

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

Small Bowel Cancer - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 on the side of your screen.

This year, an estimated 10,090 adults (5,390 men and 4,700 women) in the United States will be diagnosed with small bowel cancer.

It is estimated that 1,330 deaths (710 men and 620 women) from this disease will occur this year.

As explained in the Overview, there are several types of small bowel cancer, and survival rates are different for each. 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 adenocarcinoma depends on the stage and grade. It is 55% for stage I (one), between 35% and 49% for stage II (two), between 18% and 31% for stage III (three), and 5% for stage IV (four), which is cancer that has spread to other areas in the body.

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 small bowel 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.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts & Figures 2016, and the ACS website.

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 on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 on the side of your screen.

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 can help you make more informed lifestyle and health care choices.

The following factors may raise a person’s risk of small bowel cancer:

  • Diet. Eating high-fat foods may raise the risk of small bowel cancer. Regularly consuming smoked or cured foods may also increase a person’s risk.

  • Crohn’s disease. Crohn’s disease is a chronic inflammation of the gastrointestinal tract. People with Crohn’s disease have a higher risk of colorectal and small bowel cancers.

  • Celiac disease. Celiac disease is a digestive disease that interferes with the absorption of nutrients from food in the small bowel. The body’s immune system responds to a protein called gluten—which is found in wheat, rye, barley, and oats—and can damage the lining of the small bowel.

  • Familial adenomatous polyposis (FAP). FAP is an inherited condition characterized by hundreds or thousands of colon polyps, which are small growths. The polyps are usually benign (noncancerous), but there is nearly a 100% chance that the polyps will develop into cancer if left untreated. Individuals with FAP are also at risk for other types of cancer, including stomach cancer, duodenal cancer, thyroid cancer, pancreatic cancer, and hepatoblastoma, which is liver cancer seen mainly in early childhood. Learn more about FAP.

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

Small Bowel Cancer - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 on the side of your screen.

People with small bowel cancer may experience the following symptoms or signs. Sometimes, people with small bowel cancer do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer.

  • Blood in the stool (feces)

  • Dark/black stools

  • Diarrhea

  • A lump in the abdomen

  • Pain or cramps in the abdomen

  • Unexplained weight loss

  • Episodes of abdominal pain that may be accompanied by severe nausea or vomiting

If you are concerned about one or more of the symptoms or signs on this list, 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 and it explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose cancer and find out if it has spread to another part of the body, called metastasis. Some tests may also determine which treatments may be the most effective. For most types of cancer, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the cancer has spread.

This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition

  • Type of cancer suspected

  • Signs and symptoms

  • Previous test results

In addition to a physical examination, the following tests may be used to diagnose small bowel cancer:

  • Blood tests. A test of the number of red blood cells in the blood can indicate whether the cancer is causing any bleeding. Tests for your liver and kidney function may be performed. The results will determine if either of those organs may be affected by the cancer and test how healthy those organs are before having treatment for small bowel cancer.

  • X-ray. An x-ray is way to create a picture of the structures inside of the body using a small amount of radiation. It can help the doctor find a tumor. For small bowel cancer, x-rays may be taken of the entire gastrointestinal system, including the esophagus, stomach, small bowel, large intestine, and rectum. Sometimes, the person will drink a substance called barium, which outlines the esophagus, stomach, and small bowel on the x-ray and helps the doctor see tumors or other abnormal areas. This is called an upper gastrointestinal series with small bowel follow-through (UGI SBFT). To get a better picture of the lower gastrointestinal tract, a barium enema may be performed. In this procedure, barium is placed into the rectum and coats the rectum and large intestine. Abdominal x-rays may also show the location of a tumor.

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. 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.

  • Endoscopy. A test called an endoscopy allows the doctor to see the inside the gastrointestinal system. The person may be sedated while the doctor inserts a thin, lighted, flexible tube called an endoscope through the mouth, down the esophagus, and into the stomach and small bowel. Sedation is giving medication to become more relaxed, calm, or sleepy. If abnormal areas are found, the doctor can remove a sample of tissue and check it for evidence of cancer. An endoscopy allows the doctor to see some, but not all, of the small bowel. Because of this, the doctor usually recommends a videocapsule endoscopy (VCE). In this method, the patient swallows a small (pill-sized) capsule that contains a tiny camera and light. Pictures are collected from the capsule as it travels through the patient’s gastrointestinal system. The capsule exits the body during the patient’s next bowel movement.

  • Colonoscopy. A colonoscopy is similar to the traditional endoscopy described above, except that the endoscope enters the body through the anus and rectum into the colon and lower part of the small bowel.

  • Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. 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 check for the spread of cancer to the lungs, liver, and other organs.

  • Positron emission tomography (PET) scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.

  • Laparotomy. In this procedure, a surgical incision is made in the abdomen to check for disease. Sometimes, tissue samples are taken and, often, surgery is performed at the same time to remove the tumor.

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is small bowel cancer, these results also help the doctor describe the cancer; this is called staging.

The next section in this guide is Stages, and it explains the system doctors use to describe the extent of the disease. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Stages and Grades

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. In addition, you can read about how doctors evaluate and compare cancer cells to normal cells, called grading. To see other pages, use the menu on the side of your screen.

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 the tests are finished. Knowing the stage helps the doctor to decide what 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 cancers.

TNM staging system

One tool that doctors use to describe the stage is the TNM system. Doctors use the results from diagnostic tests and scans to answer these questions:

  • Tumor (T): How large is the primary tumor? Where is it located?

  • Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?

  • Metastasis (M): Has the cancer metastasized to other parts of the body? If so, where and how much?

The results are combined to determine the stage of cancer for each person. There are five stages: stage 0 (zero) and stages I through IV (one through four). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.

Here are more details on each part of the TNM system for the adenocarcinoma type of small bowel cancer. Other types of small bowel cancer are staged differently; see the guide to other types in the Overview for more information.

Tumor (T)

Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the location of the small bowel tumor. Some stages are also divided into smaller groups that help describe the tumor even in more detail. This helps the doctor develop the best treatment plan for each patient. Specific tumor stage information is listed below.

TX: The primary tumor cannot be evaluated.

T0: There is no evidence of a primary tumor.

Tis: This refers to carcinoma (cancer) in situ. Cancer in situ is very early cancer in which cancer cells are found only in one small area and have not spread.

T1a: There is a tumor in the lamina propria, the innermost layer of the small bowel.

T1b: There is a tumor in the submucosa, the next deepest layer of the small bowel.

T2: The tumor is in the muscularis propria, the third layer of the small bowel.

T3: The tumor has grown through the muscularis propria and into the subserosa, a thin layer of connective tissue beneath the outer layer of some parts of the large intestine, or into tissues surrounding the small bowel.

T4: The tumor has invaded other organs or has grown through the lining of the abdominal cavity, the space between the abdomen and the spine that holds several organs, called the visceral peritoneum.

Node (N)

The “N” in the TNM staging system stands for lymph nodes, the tiny, bean-shaped organs that help fight infection. Lymph nodes near the small bowel are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes.

NX: The regional lymph nodes cannot be evaluated.

N0 (N plus zero): There is no regional lymph node metastasis.

N1: Cancer has spread to 1 to 3 regional lymph nodes.

N2: Cancer has spread to 4 or more lymph nodes.

Metastasis (M)

The “M” in the TNM system indicates whether the cancer has spread to other parts of the body, called distant metastasis.

MX: Distant metastasis cannot be evaluated.

M0: The disease has not metastasized.

M1: There is distant metastasis, meaning the cancer has spread to other parts of the body beyond the small bowel.

Cancer stage grouping for small bowel adenocarcinoma

Doctors assign the stage of the cancer by combining the T, N, and M classifications.

Stage 0: This refers to cancer in situ. The cancer is found in only one place and has not spread (Tis, N0, M0).

Stage I: The cancer has grown through the inner layers of the small bowel. It has not spread into nearby tissue or lymph nodes (T1 or T2, N0, M0).

Stage IIA: The cancer has spread through the wall of the small bowel, and it may have spread to nearby tissue. It has not spread to the nearby lymph nodes (T3, N0, M0).

Stage IIB: The cancer has invaded nearby structures outside of the small bowel, but it has not spread to the nearby lymph nodes (T4, N0, M0).

Stage IIIA: The cancer has spread to 1 to 3 regional lymph nodes. It may or may not have grown through the inner lining or into the muscle layers of the small bowel, but it has not spread to other parts of the body (any T, N1, M0).

Stage IIIB: The cancer has spread to 4 or more regional lymph nodes. It may or may not have grown through the inner lining or into the muscle layers of the small bowel, but it has not spread to other parts of the body (any T, N2, M0).

Stage IV: The cancer has spread to other parts of the body, such as the liver or lungs (any T, any N, M1).

Recurrent: Recurrent cancer is cancer that has come back after treatment. The disease may return in the colon, rectum, or another part of the body. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Grade (G)

Doctors also describe this type of cancer by its grade (G), which describes how much cancer cells look like healthy cells when viewed under a microscope. The doctor compares the cancerous tissue with healthy tissue. Healthy tissue usually contains many different types of cells grouped together. If the cancer looks similar to healthy tissue and contains different cell groupings, it is called differentiated or a low-grade tumor. If the cancerous tissue looks very different from healthy tissue, it is called poorly differentiated or a high-grade tumor. The cancer’s grade may help the doctor predict how quickly the cancer will spread. In general, the lower the tumor’s grade, the better the prognosis.

GX: The tumor grade cannot be identified.

G1: The cells look more like normal tissue cells (well differentiated).

G2: The cells are somewhat different (moderately differentiated).

G3: The cells look very unlike normal cells (poorly differentiated).

G4: The cells barely resemble normal cells (undifferentiated).

Used with permission of the American Joint Committee on Cancer (AJCC), Chicago, Illinois. The original source for this material is the AJCC Cancer Staging Manual, Seventh Edition published by Springer-Verlag New York, www.cancerstaging.net.

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 on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 on the side of your screen.

This section outlines treatments that are the standard of care (the best known treatments available) for this specific type of cancer. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study to test a new approach to treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Your doctor can help you review all treatment options. For more information, 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 small bowel cancer are listed below. Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health. Take time to learn about 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. It is the most common treatment for small bowel cancer. A surgical oncologist is a doctor who specializes in treating cancer using surgery. Surgery may be used to remove the tumor and the affected part of the small intestine, join the bowel back together, and/or bypass an obstruction (blockage) of the small bowel. Depending on the extent of surgery, it may be necessary to follow a special diet with medicines and supplements to help digestion.

The side effects of surgery may include pain and tenderness in the area of the operation. The operation may also cause constipation or diarrhea, which usually goes away after some time. Talk with your surgeon about the possible side effects of your surgery, including what to expect during your recovery.

Learn more about the basics of cancer surgery.

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. A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

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).

Since chemotherapy affects normal cells as well as cancer cells, many people experience side effects from treatment. 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 constantly 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.

Radiation therapy

Radiation therapy is the use of 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. Radiation therapy is not often used as the primary treatment for small bowel cancer. It is more commonly used as a palliative treatment (see below) to help relieve side effects.

The most common type of radiation treatment is called external-beam radiation, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Side effects from radiation therapy include tiredness, 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.

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. Examples of immunotherapy include cancer vaccines, monoclonal antibodies, and interferons. Talk with your doctor about whether immunotherapy is a treatment option, including the possible side effects. Learn more about the basics of immunotherapy.

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

Metastatic small bowel cancer

If cancer has spread to another location in the body, it is called metastatic cancer. Patients with this diagnosis are encouraged to talk with doctors who are experienced in treating this stage of cancer, because there can be different opinions about the best treatment plan. Learn more about getting a second opinion before starting treatment, so you are comfortable with the treatment plan chosen. This discussion may include clinical trials.

Your health care team may recommend one or more of the following types of treatment: surgery, radiation therapy, chemotherapy, and immunotherapy. 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, chemotherapy, and radiation therapy 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 six 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 the 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 and it offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 on the side of your screen.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with small bowel 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 previously tested in clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. 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 are often among the first to receive new treatments, such as new chemotherapy drugs, before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

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 small bowel cancer, such as finding new drugs. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with small bowel 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

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for small bowel 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 and it explains areas of scientific research currently going on for this type of cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 on the side of your screen.

Doctors are working to learn more about small bowel 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.

Because small bowel cancer is uncommon, small bowel cancer-specific clinical trials may be hard to find. Some clinical trials on the diagnosis, treatment, and causes of colorectal cancer may be open to people with small bowel adenocarcinoma.

Areas of current research include:

  • Radiosensitizers. Researchers are investigating the use of radiosensitizers in the treatment of small bowel cancer. Radiosensitizers are drugs that make tumor cells more susceptible to radiation therapy, making radiation therapy more effective.

  • Immunotherapy. As explained under Treatment Options, immunotherapy is being actively investigated for its best uses in treating small bowel cancer.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current small bowel cancer treatments in order 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 small bowel cancer, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Side Effects and 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 on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of cancer, but it may help to know that preventing and controlling side effects is a major focus of your health care team. This is called palliative care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

There are possible side effects for every cancer treatment, but patients don’t experience the same side effects when given the same treatments for many reasons. That can make it hard to predict exactly how you will feel during treatment. Common side effects from each treatment option for small bowel cancer are described in detail within the Treatment Options section. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the cancer’s stage, the length and dosage of treatment(s), and your overall health.

Talking with your health care team about side effects

Before treatment begins, talk with your doctor about possible side effects of each type of treatment you will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them.

And, ask about the level of caregiving you may need during treatment and recovery, as family members and friends often play an important role in the care of a person with small bowel cancer. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your cancer care.

During and after treatment, be sure to tell the health care team about the side effects you experience, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of 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.

The next section in this guide is Follow-up Care and it explains the importance of check-ups after cancer treatment is finished. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Follow-up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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

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.

This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. 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. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests 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.

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.

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 and it describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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

What is survivorship?

The word survivorship means different things to different people. Two common definitions include:

  • Having no signs of cancer after finishing treatment.

  • The process of 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.

In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every person.

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 small bowel 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 check-ups 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 these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: This 44-page booklet (available as a PDF) helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms.

  • 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 on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 on the side of your screen.

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 small bowel cancer do I have?

  • Can you explain my pathology report (laboratory test results) to me?

  • What is the stage of the cancer? What does this mean?

  • How many patients with this type of cancer do you treat a year?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What clinical trials are open to me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend?

  • Is the treatment you recommend a standard treatment or part of a clinical trial?

  • What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?

  • When would you recommend I begin this treatment? How long will it be given?

  • Who will be a part of my health care team, and what does each member do?

  • Who will be coordinating my overall treatment and follow-up care?

  • What are the potential side effects, both in the short term and in the long term?

  • 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?

  • If I’m worried about managing the costs related to my cancer care, who can help me with these concerns?

Questions to ask about having surgery

  • What do you know about my cancer at this point? What do you expect to know after surgery?

  • What other tests will be done before surgery?

  • Can you describe the surgery I will be having?

  • Is this standard surgery for small bowel cancer?

  • How much of my small intestine will you be removing? Will you also be removing lymph nodes?

  • Is a biopsy part of the surgery?

  • How many times have you performed this type of operation successfully?

  • How soon after surgery will I have all test results?

  • Who will give me information about how I should get ready for surgery and a hospital stay? How long will I be in the hospital? How long will recovery take?

  • How will pain be controlled after surgery?

  • Will I need to follow a special diet, with medicines and supplements to aid digestion, after surgery? For how long?

Questions to ask about having radiation therapy, or chemotherapy, etc.

  • What type of treatment 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 risk of the cancer returning? Are there signs and symptoms I should watch for?

  • 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 coordinating my follow-up care?

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

  • Does my diagnosis mean that my close relatives are at higher risk for small bowel cancer? Should they talk with their doctors about screening?

  • Whom should I call for questions or problems?

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Small Bowel Cancer - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

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 Small Bowel Cancer. To go back and review other pages, use the menu on the side of your screen.

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 Small Bowel Cancer. Use the menu on the side of your screen to select another section to continue reading this guide.