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Small Bowel Cancer - Introduction

Approved by the Cancer.Net Editorial Board, 08/2023

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. Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.

About the small bowel

The small bowel is part of the digestive system. It breaks 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 3 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 about 3/4 of the digestive system.

Small bowel cancer

Small bowel cancer starts when healthy cells in the lining of the small bowel change and grow out of control, 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. Cell 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 5 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. This guide focuses on this type of small bowel cancer.

  • 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.

  • Neuroendocrine tumor. Neuroendocrine tumors start in the hormone-producing cells of various organs and generally occur in the ileum. These may also be called a carcinoid tumor. Learn more about neuroendocrine 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.

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Cancer.Net:

The next section in this guide is Statistics. It helps explain the number of people who are diagnosed with small bowel cancer and general survival rates. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Statistics

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed each year with small bowel cancer, also called small intestine cancer. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original sources for these statistics are provided at the bottom of this page.

How many people are diagnosed with small bowel cancer?

In 2023, an estimated 12,070 adults (6,580 men and 5,490 women) in the United States will be diagnosed with small bowel cancer. The disease makes up less than 10% of gastrointestinal tract cancers and less than 1% of all cancers. The disease is diagnosed most often in people in their 60s and 70s.

It is estimated that 2,070 deaths (1,170 men and 900 women) from this disease will occur in the United States in 2023.

What is the survival rate for small bowel cancer?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from small bowel cancer. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having cancer may affect life expectancy. Relative survival rate looks at how likely people with small bowel cancer are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this cancer.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for people with small bowel cancer are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

The 5-year relative survival rate for all types of small bowel cancer is 69%.

As explained in the Introduction, there are several types of small bowel cancer. Talk with your doctor about the survival rate for your specific diagnosis. The survival rates for small bowel cancer vary based on several factors. These include the stage and grade of cancer, a person’s age and general health, and how well the treatment plan works.

When detected at an early stage, the 5-year relative survival rate for small bowel cancer is 84%. Around 31% of cases are diagnosed at this stage. If small bowel cancer has spread to surrounding tissues or organs and/or the regional lymph nodes, the 5-year relative survival rate is 78%. If the cancer has spread to a distant part of the body, the 5-year relative survival rate is 42%.

Experts measure relative survival rate statistics for small bowel cancer every 5 years. This means the estimate may not reflect the results of advancements in how small bowel cancer is diagnosed or treated from the last 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts & Figures 2023, the ACS website, and the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program. (All sources accessed March 2023.)

The next section in this guide is Risk Factors. It describes the factors that may increase the chance of developing small bowel cancer. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Risk Factors

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will find out more about the factors that increase the chance of developing small bowel cancer. Use the menu to see other pages.

What are the risk factors for small bowel cancer?

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. 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 adenocarcinoma:

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

  • 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 mixture called gluten—which is found in wheat, rye, barley, oats, and other grain foods—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. It explains what changes or medical problems small bowel cancer can cause. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will find out more about the changes and medical problems that can be a sign of small bowel cancer. Use the menu to see other pages.

What are the symptoms and signs of small bowel cancer?

People with small bowel cancer may experience one or more of the following symptoms or signs. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, people with small bowel cancer do not have any of the symptoms and signs described below. Or, the cause of a symptom or sign may be 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 any changes you experience, please talk with your doctor. Your doctor will try to understand what is causing your symptom(s). They may do an exam and order tests to understand the cause of the problem, which is called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. Managing symptoms may also be called "palliative and supportive care,” which is not the same as hospice care given at the end of life. This type of care focuses on managing symptoms and supporting people who face serious illnesses, such as cancer. You can receive palliative and supportive care at any time during cancer treatment. Learn more in this guide’s section on Coping with Treatment.

Be sure to talk with your health care team about the symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Diagnosis

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of the medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How small bowel adenocarcinoma is diagnosed

There are different tests used for diagnosing small bowel cancer. Not all tests described here will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and general health

  • The results of earlier medical tests

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 also be performed. The results will determine whether either of those organs may be affected by the cancer and find out how healthy those organs are before having treatment for small bowel cancer.

  • X-ray. An x-ray creates 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).

  • Biopsy. A biopsy is the only way to make a definite diagnosis, even if other tests can suggest that cancer is present. During a biopsy, a small amount of tissue is removed for examination under a microscope. A pathologist 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. An endoscopy shows the inside of the gastrointestinal system using a thin, lighted, flexible tube called an endoscope. The person is sedated while the doctor inserts the 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 may recommend 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 through normal 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 takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional or 3D image that shows any abnormalities or tumors. A CT scan can 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 or liquid to swallow. A CT scan can check for the spread of cancer to the lungs, liver, and other organs.

  • Positron emission tomography (PET) or PET-CT scan. A PET scan creates pictures of organs and tissues inside the body. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. 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. However, the amount of radiation in the substance is too low to be harmful. A scanner then detects this substance to produce images of the inside of the body.

  • Laparoscopy or 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.

  • Biomarker testing of the tumor. Your doctor may recommend running laboratory tests on a tumor sample to identify specific genes, proteins, and other factors unique to the tumor. This may also be called molecular testing of the tumor. Results of these tests can help determine whether immunotherapy may be a treatment option for metastatic disease or if your tumor has a specific gene mutation that can be targeted with a targeted medication.

  • Liquid biopsy. A liquid biopsy is a blood test that measures circulating tumor DNA (ctDNA) that may be in your blood. Like biomarker testing of the tumor, results of a liquid biopsy can also help determine whether immunotherapy may be a treatment option. Liquid biopsies may be done in addition to biomarker testing of the tumor.

After diagnostic tests are done, your doctor will review 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 Grades. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Stages and Grades

Approved by the Cancer.Net Editorial Board, 08/2023

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. Use the menu to see other pages.

READ MORE BELOW:

What is cancer staging?

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 recommend the best kind of treatment, and it can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancers.

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TNM staging system for small bowel adenocarcinoma

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 spread 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 5 stages: stage 0 (zero) and stages I through IV (1 through 4). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.

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. Tumor size is measured in centimeters (cm).

Stage may also be divided into smaller groups that help describe the tumor in even 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 (T zero): 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 1 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 certain 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. These small, bean-shaped organs 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 zero): There is no cancer in the regional lymph nodes.

N1: Cancer has spread to 1 to 2 regional lymph nodes.

N2: Cancer has spread to 3 or more regional lymph nodes.

Metastasis (M)

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

MX: Distant metastasis cannot be evaluated.

M0 (M zero): There is no metastasis.

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

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Stage groups for small bowel adenocarcinoma

Doctors combine the T, N, and M information (see above) to say what stage the cancer is.

Stage 0: This refers to cancer in situ. The cancer is found in only 1 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 small bowel 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.

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Grade (G)

Doctors also describe small bowel cancer by its grade (G). The grade 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 has different cell groupings, it is called “well 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).

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Used with permission of the American College of Surgeons, Chicago, Illinois. The original and primary source for this information is the AJCC Cancer Staging Manual, Eighth Edition (2017), published by Springer International Publishing.

Information about the cancer’s stage and grade will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Types of Treatment

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will learn about the different types of treatments doctors use for people with small bowel cancer. Use the menu to see other pages.

This section explains the types of treatments, also known as therapies, that are the standard of care for small bowel cancer. “Standard of care” means the best treatments known. Information in this section is based on medical standards of care for small bowel cancer in the United States. Treatment options can vary from one place to another.

When making treatment plan decisions, you are encouraged to discuss with your doctor whether clinical trials offer additional options to consider. A clinical trial is a research study that tests a new approach to treatment. Doctors learn through clinical trials whether a new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Clinical trials are an option to consider for all stages of cancer. Your doctor can help you consider all your treatment options. Learn more about clinical trials in the About Clinical Trials and Latest Research sections of this guide.

How small bowel adenocarcinoma is treated

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 include other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, physical therapists, occupational therapists, and others. Learn more about the clinicians who provide cancer care.

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. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. These types of conversations are called “shared decision-making.” Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your care. Shared decision-making is important for small bowel cancer because there are different treatment options. Learn more about making treatment decisions.

Small bowel adenocarcinomas are uncommon, so there is limited scientific research on what the best treatment options are. Because small bowel adenocarcinomas are similar to colon cancers, they are often treated with the same treatments as colon cancer. Not all of the treatments described below have received approval from the U.S. Food and Drug Administration (FDA) for the treatment of small bowel adenocarcinoma. Be sure to talk with your doctor about your treatment options and plan. This discussion should include whether there are clinical trials for small bowel adenocarcinomas available for you.

The common types of treatments used for small bowel cancer are described below. Your care plan also includes treatment for symptoms and side effects, an important part of cancer care.

READ MORE BELOW:

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 when it has not spread to distant sites. 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. Lymph nodes may also need to be removed to find out the risk of the cancer spreading.

There is a risk that some cancer cells may remain in the body and spread after surgery, even with stage I to stage III disease. This is why the doctor may recommend another type of treatment, such as chemotherapy, be given after surgery to lower this risk. The decision to recommend post-surgery chemotherapy is based on discussion between the doctor and the patient, with consideration of the stage of disease and potentially other pathology features of the tumor. This kind of treatment is called adjuvant therapy (see "Therapies using medication," below).

Depending on the extent of surgery, it may be necessary to follow a special diet with medicines and supplements to help your digestion. Other side effects of surgery may include pain and tenderness in the area of the operation, infections, bleeding, or poor wound healing. The operation may also cause constipation or diarrhea, which usually goes away after some time. Talk with your health care team about the possible side effects of your surgery, including what to expect during your recovery. This should include how you can eat well and maintain nutrition during and after treatment.

Learn more about the basics of cancer surgery.

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Therapies using medication

The treatment plan may include medications to destroy cancer cells. Medication may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may also be given locally, which is when the medication is applied directly to the cancer or kept in a single part of the body.

This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication.

Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If you are given oral medications to take at home, be sure to ask your health care team about how to safely store and handle them.

The types of medications used for small bowel cancer include:

  • Chemotherapy

  • Immunotherapy

  • Targeted therapy

Each of these types of therapies is discussed below in more detail. A person may receive 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.

The medications used to treat cancer are continually 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.

It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Learn more about your prescriptions by using searchable drug databases.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells.

A patient may receive 1 drug at a time or a combination of different drugs at the same time. Chemotherapy is sometimes given after surgery as adjuvant therapy in the treatment of small bowel adenocarcinoma (see "Surgery," above). It can also be prescribed to relieve side effects for people with advanced cancer. Common regimens for small bowel adenocarcinoma include:

  • Fluorouracil (5-FU)/leucovorin (folinic acid)

  • FOLFOX: 5-FU with leucovorin and oxaliplatin (Eloxatin)

  • FOLFIRI: 5-FU with leucovorin and irinotecan (Camptosar)

  • CAPEOX: Capecitabine (Xeloda) with oxaliplatin

  • Capecitabine: An oral form of 5-FU

  • FOLFOXIRI: 5-FU, leucovorin, oxaliplatin, irinotecan

  • Bevacizumab (Avastin, which is a targeted therapy, see below) may be combined with a chemotherapy regimen to treat metastatic small bowel adenocarcinoma.

Unlike colon cancer, some studies for small bowel adenocarcinoma have shown a benefit to using taxane-based chemotherapy regimens, such as paclitaxel (available as a generic drug), docetaxel (Taxotere), and nab-paclitaxel (Abraxane), either as a single drug or in combination with gemcitabine (Gemzar) or carboplatin (available as a generic drug).

If surgery is not possible, the doctor may recommend chemotherapy to shrink the tumor to the point where it can be surgically removed. This is called neoadjuvant therapy. Sometimes, chemotherapy combined with radiation therapy may be recommended for neoadjuvant therapy. This is called chemoradiation.

Chemotherapy affects normal cells as well as cancer cells, so many people experience side effects from this 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. Talk with your health care team about the specific chemotherapy prescribed for you and what side effects are possible, including how they can be relieved or managed.

Learn more about the basics of chemotherapy.

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Immunotherapy

Immunotherapy uses the body's natural defenses to fight cancer by improving your immune system’s ability to attack cancer cells. Examples of immunotherapy include cancer vaccines, monoclonal antibodies, and interferons.

In some people, small bowel adenocarcinoma may have a molecular feature called high microsatellite instability (MSI-H) or mismatch repair deficiency (dMMR). Tumors with these features can be treated with a type of immunotherapy called an immune checkpoint inhibitor if the disease has spread to other parts of the body and previous first-line treatment did not work. Immune checkpoint inhibitors that may be used to treat small bowel adenocarcinoma include:

  • Pembrolizumab (Keytruda)

  • Nivolumab (Opdivo)

  • Ipilimumab (Yervoy)

  • Dostarlimab (Jemperli)

Different types of immunotherapy can cause different side effects. Common side effects include skin reactions, flu-like symptoms, diarrhea, and changes in your thyroid hormone levels. Talk with your doctor about possible side effects for the immunotherapy recommended for you. Learn more about the basics of immunotherapy.

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Targeted therapy

Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells and limits damage to healthy cells.

Not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.

Targeted therapy for small bowel adenocarcinoma includes:

  • Bevacizumab (Avastin). Bevacizumab is an anti-angiogenesis therapy that stops angiogenesis, which is the process of making new blood vessels. When bevacizumab is used to treat small bowel adenocarcinoma, it is combined with chemot.herapy (see above).

  • Tumor-agnostic treatment. The combination of dabrafenib (Tafinlar) and trametinib (Mekinist) are types of targeted therapy that are not specific to a certain type of cancer but focus on a specific genetic change called a BRAF mutation. This type of genetic change is rare but is found in a range of cancers, including small bowel adenocarcinoma. It may be used to treat metastatic cancer. Larotrectinib (Vitrakvi) and entrectinib (Rozlytrek) are other examples, which target a specific genetic change called an NTRK fusion.

Talk with your doctor about possible side effects for a specific medication and how they can be managed.

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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. But it may be combined with chemotherapy, called chemoradiation, to shrink tumors with the goal of making surgery possible (see above). 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, or 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.

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Physical, emotional, social, and financial effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative and supportive care. It is an important part of your care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative and supportive care focuses on improving how you feel during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative and supportive care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. You may also receive palliative treatments, such as chemotherapy, surgery, or radiation therapy, to improve symptoms. For example, if the cancer has blocked the bowel, then surgery with or without chemotherapy may be used to remove the blockage.

Before treatment begins, talk with your doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Cancer care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns.

During treatment, your health care team may ask you to answer questions about your symptoms and side effects and to describe each problem. Be sure to tell the health care team if you are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative and supportive care in a separate section of this website.

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Metastatic small bowel cancer

If cancer spreads to another part in the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Clinical trials might also be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

Your treatment plan may include a combination of chemotherapy, immunotherapy, and targeted therapy. Often, chemotherapy with or without targeted therapy will be the first treatment recommended. Radiation or surgery are used in rare cases to help relieve symptoms or to address a localized problem like a blocked bowel. If the cancer has a specific molecular feature called MSI-H or dMMR, an immune checkpoint inhibitor may be recommended (see “Immunotherapy,” above) as second-line therapy. Otherwise, a different chemotherapy regimen may be offered. Palliative and supportive care will also be important to help relieve symptoms and side effects.

For many people, a diagnosis of metastatic cancer is very stressful and difficult. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of your health care team. It may also be helpful to talk with other patients, such as through a support group or other peer support program.

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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 is 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 returns 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).

If a recurrence happens, a new cycle of testing will begin to learn as much as possible about it. After this testing is done, you and your doctor will talk about the 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 suggest clinical trials that are studying new ways to treat recurrent small bowel adenocarcinoma. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

People with recurrent cancer sometimes experience emotions such as disbelief or fear. You are encouraged to talk with your health care team about these feelings and ask about support services to help you cope. Learn more about dealing with cancer recurrence.

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If treatment does not work

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 for some people, advanced cancer is difficult to discuss. However, it is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help. Making sure a person is physically comfortable, free from pain, and emotionally supported is extremely important.

Planning for your future care and putting your wishes in writing is important, especially at this stage of disease. Then, your health care team and loved ones will know what you want, even if you are unable to make these decisions. Learn more about putting your health care wishes in writing.

People who have advanced cancer and who are expected to live less than 6 months may want to consider 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 talk with your doctor or a member of your palliative care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option 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.

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The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for people with small bowel cancer. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Clinical trials are used for all types and stages of small bowel cancer. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some, 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. Others volunteer for clinical trials because they know that these studies are a 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 people with small bowel cancer.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” When used, placebos are almost always combined with standard treatment in cancer clinical trials. It is very rare that someone will receive a placebo alone in cancer clinical trials. Study participants will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, people must participate in a process known as informed consent. During informed consent, the doctor should:

  • Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

  • Describe the purposes of the clinical trial and what researchers are trying to learn.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. You will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.

People who participate in a clinical trial may stop participating at any time for personal or medical reasons. 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 people 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 they choose 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.

There are many resources and services to help you search for clinical trials for small bowel cancer, including the following services. Please note that these links will take you to separate, independent websites:

  • ClinicalTrials.gov. This U.S. government database lists publicly and privately supported clinical trials.

  • World Health Organization (WHO) International Clinical Trials Registry Platform. The WHO coordinates health matters within the United Nations. This search portal gathers clinical trial information from many countries’ registries.

Read more about the basics of clinical trials matching services.

The next section in this guide is Latest Research. It explains areas of scientific research for small bowel cancer. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Latest Research

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will read about the scientific research being done to learn more about small bowel cancer and how to treat it. Use the menu to see other pages.

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 best diagnostic and treatment options for you.

Because small bowel cancer is uncommon, clinical trials studying only small bowel cancer 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, which makes radiation therapy more effective.

  • Immunotherapy. As explained in Types of Treatment, immunotherapy is being actively studied in small bowel cancer. This includes novel medications, vaccines, and cell-based therapies.

  • Targeted therapy. Targeted therapies treat a specific genetic change in your tumor if it is there. These may be more effective and have fewer side effects compared to systemic treatments without a target, such as chemotherapy.

  • Palliative and supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current small bowel cancer treatments to improve comfort and quality of life for patients.

Looking for More About the Latest Research?

If you would like more information about the latest areas of research in small bowel cancer, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people do not experience the same side effects even when they are given the same treatment for the same type of cancer. This can make it hard to predict how you will feel during treatment.

READ MORE BELOW:

As you prepare to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. This part of cancer treatment is called palliative and supportive care. It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for small bowel cancer are described in the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.

Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.

You may find it helpful to keep track of your side effects so it is easier to talk about any changes with your health care team. Learn more about why tracking side effects is helpful.

Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called late effects. Treating long-term side effects and late 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.

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Coping with emotional and social effects

You can have emotional and social effects after a cancer diagnosis. This may include dealing with a variety of emotions, such as sadness, anxiety, fear, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

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Coping with the costs of cancer care

Cancer treatment can be expensive. It may be a source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost of medical care stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Patients and their families are encouraged to talk about financial concerns with a member of their health care team Learn more about managing financial considerations in a separate part of this website.

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Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health, such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities, people with fewer financial resources, sexual and gender minorities (LGBTQ+), adolescent and young adult populations, adults older than 65, and people who live in rural areas or other underserved communities.

If you are having difficulty getting the care you need, talk with a member of your health care team or explore other resources that help support medically underserved people.

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Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

  • When and who should I call about side effects?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.

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Caring for a loved one with small bowel cancer

Family members and friends often play an important role in taking care of a person with small bowel cancer. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves.

Caregivers may have a range of responsibilities on a daily or as-needed basis, including:

  • Providing support and encouragement

  • Talking with the health care team

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to and from appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. It may be helpful to ask the health care team how much care will be needed at home and with daily tasks during and after treatment. Use this 1-page fact sheet to help make a caregiving action plan. This free fact sheet is available as a PDF, so it is easy to print.

Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish.

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Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression, constipation, diarrhea, and rash that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.

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The next section in this guide is Follow-up Care. It explains the importance of checkups after you finish cancer treatment. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Follow-up Care

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will read about your medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with cancer does not end when active treatment has finished. Your health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational 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 as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. 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 ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects

Most people expect to have 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. Other side effects called late effects may develop months or even years after treatment has ended. 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 your diagnosis, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may 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 discuss any concerns you have about your future physical or emotional health. The American Society of Clinical Oncology (ASCO) offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan when treatment is completed.

This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the care of their primary care doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, treatments received, 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 them and with 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. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Survivorship

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” is complicated because it means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and continues during treatment and through the rest of a person's life.

For some, the term “survivorship” itself does not feel right, and they may prefer to use different language to describe and define their experience. Sometimes long-term treatment will be used for months or years to manage or control cancer. Living with cancer indefinitely is not easy, and the health care team can help you manage the challenges that come with it. Everyone has to find their own path to name and navigate the changes and challenges that are the results of their cancer diagnosis and treatment.

Survivors may experience a mixture of 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 about coping with everyday life. Feelings of fear and anxiety may still occur as time passes, but these emotions should not be a constant part of your daily life. If they persist, be sure to talk with a member of your health care team.

Survivors may feel some stress when their frequent visits to the health care team end after completing 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 when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexual health 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

  • 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 place where you received treatment.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make 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, exercising regularly, 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.

It is important to have recommended medical checkups and tests (see Follow-up Care) to take care of your health.

Talk with your health care team to develop a survivorship care plan that is best for your needs.

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.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:

  • ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.

  • Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children, teens and young adults, and people over age 65. There is also a main section on survivorship for people of all ages.

The next section offers Questions to Ask the Health Care Team to help start conversations with your cancer care team. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 08/2023

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team 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. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

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 stage and grade is the cancer? What does this mean?

  • How many patients with small bowel cancer do you treat a year?

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

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What types of research are being done for small bowel cancer in clinical trials? Do clinical trials offer additional treatment options for me?

  • What treatment plan do you recommend? Why?

  • 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?

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

  • When do 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 leading my overall treatment?

  • 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 of cancer care, who can help me?

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

  • If I have questions or problems, who should I call?

Questions to ask about having surgery

  • What do you know about the tumor 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 after surgery, with medicines and supplements to aid digestion? For how long?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term effects of having this surgery?

Questions to ask about having therapies using medication

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • Will I receive this treatment at a hospital or clinic? Or will I take it at home?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve the side effects?

Questions to ask about having radiation therapy

  • 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?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • 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 those tests be needed?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • When should I return to my primary care doctor for regular medical care?

  • Who will be leading my follow-up care?

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

The next section in this guide is Additional Resources. It offers some more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Small Bowel Cancer - Additional Resources

Approved by the Cancer.Net Editorial Board, 08/2023

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. Use the menu to go back and review other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of a tumor, 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.

Here are a few links to help you explore other parts of Cancer.Net:

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