View All Pages

Neuroendocrine Tumor of the Gastrointestinal Tract - Introduction

Approved by the Cancer.Net Editorial Board, 07/2022

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

About neuroendocrine tumors

A tumor begins when the DNA of healthy cells is damaged, causing the cells to change and grow out of control, forming a mass. A tumor can be cancerous or benign. A cancerous tumor can grow and spread to other parts of the body if it is not found early and treated. This is sometimes called a malignant tumor.

A neuroendocrine tumor (NET) begins in the specialized cells of the body’s neuroendocrine system. These cells have traits of both hormone-producing endocrine cells and nerve cells. They are found throughout the body’s organs and help control many of the body’s functions. Hormones are chemical substances that are carried through the bloodstream to have a specific effect on how other organs or cells in the body behave. All NETs have the potential to become metastatic. Most NETs take years to develop and grow slowly. However, some NETs can be fast-growing. See the Stages and Grades section to learn more.

NETs can develop in any part of the body. NETs develop most commonly in the gastrointestinal (GI) tract or in the lungs (learn more about NETs of the lung). GI tract NETs and lung NETs used to be called carcinoid tumors. Some NETs start in the pancreas. Rare types of NETs that develop in or on the adrenal glands are called pheochromocytoma or paraganglioma. Learn more about NETs that develop in other parts of the body.

About GI tract NETs

illustration of the body's internal organs

This illustration shows an overview of the body’s internal organs, including the lungs, liver, stomach, small intestine, appendix, colon, and rectum. Copyright 2004 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC.

The most common places in the body where NETs form is the GI tract, or digestive system. The body's GI tract starts at the esophagus and ends at the anus. It plays a central role in digesting food and liquid and in processing waste.

In general, many GI tract NETs start in the small intestine or rectum. They can also start in the stomach, appendix, colon, and elsewhere in the GI tract.

Because these tumors develop from neuroendocrine cells, they can make high levels of hormone-like substances called neuropeptides and amines. About 40% of NETs release hormones that lead to symptoms. These tumors are called “functional.” Carcinoid syndrome (see Symptoms and Signs) is a classic type of functional NET and is associated with the release of various substances called hormones. One of these is called serotonin (see Diagnosis), and it can be measured in the urine or blood. In other tumors, the substances may not be released in large enough amounts to cause symptoms, or the substances may be defective and not cause symptoms. These NETs are called “non-functional.”

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 a GI tract NET and general survival rates. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - Statistics

Approved by the Cancer.Net Editorial Board, 03/2023

ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with a neuroendocrine tumor of the gastrointestinal tract (GI tract NET) each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with a tumor 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 tumor 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 a GI tract NET?

As explained in the Introduction, NETs often develop in the GI tract. The number of diagnosed NETs has been increasing for years, but the reason for this is unknown. This increase is thought to be related to improvements in the way NETs are diagnosed, including better imaging tests and endoscopy, and increased awareness of these tumors.

Each year, about 8,000 adults in the United States are diagnosed with a GI tract NET. The most common places in the GI tract for this type of tumor are the small intestine and rectum.

What is the survival rate for a GI tract NET?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from a GI tract NET. 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 a tumor may affect life expectancy. Relative survival rate looks at how likely people with a GI tract NET 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 tumor.

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 a GI tract NET are only an estimate. They cannot tell an individual person if the tumor 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 a GI tract NET is 94%.

The survival rates for a GI tract NET vary based on several factors. These include the stage and grade of tumor, a person’s age and general health, and how well the treatment plan works. Another factor that can affect outcomes is the specific location of the tumor.

The 5-year relative survival rate for people with a GI tract NET that has not spread to other parts of the body from where it started is 97%. If the tumor has spread to nearby tissue or the regional lymph nodes, the 5-year relative survival rate is 96%. If the tumor has spread to distant areas of the body, the relative 5-year survival rate is 68%.

Experts measure relative survival rate statistics for a GI tract NET every 5 years. This means the estimate may not reflect the results of advancements in how a GI tract NET 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 website. Additional source was Dasari A, et al.: Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States. JAMA Oncol. 2017;3(10):1335–1342. doi:10.1001/jamaoncol.2017.0589. (All sources accessed March 2023.)

The next section in this guide is Medical Illustrations. It offers a drawing of the main body parts often affected by a GI tract NET. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - Medical Illustrations

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will find a drawing of the main body parts affected by a neuroendocrine tumor of the gastrointestinal tract (GI tract NET). Use the menu to see other pages.

Bladder Cancer Illustration

This illustration shows an overview of the body’s internal organs, including the lungs, liver, stomach, small intestine, appendix, colon, and rectum. Copyright 2004 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC. 

Copyright 2004 American Society of Clinical Oncology. Robert Morreale.

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

Neuroendocrine Tumor of the Gastrointestinal Tract - Risk Factors

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will find out more about the factors that increase the chance of developing a neuroendocrine tumor of the gastrointestinal tract (GI tract NET). Use the menu to see other pages.

What are the risk factors for a GI tract NET?

A risk factor is anything that increases a person’s chance of developing a tumor. Although risk factors often influence the development of a tumor, most do not directly cause cancer. Some people with several risk factors never develop a tumor, while others with no known risk factors do. Knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

What causes a GI tract NET is unknown, and no avoidable risk factors have been found. However, the following factors may raise a person’s risk for this type of tumor:

  • Family history and inherited syndromes. Multiple endocrine neoplasia type 1 (MEN1) is a hereditary condition that increases the risk of developing tumors in the pituitary gland, parathyroid gland, and pancreas. It is estimated that around 10% of GI tract NETs are associated with MEN1. In addition, some families have multiple relatives with GI tract NETs but no clear association with MEN1. This suggests that there may be other genetic risk factors not yet discovered.

    Other hereditary conditions related to NETs include Von Hippel-Lindau syndrome, neurofibromatosis type 1, multiple endocrine neoplasia type 2 (MEN2), and tuberous sclerosis complex.

  • Race and sex. NETs are more common among White people than Black people. They are slightly more common in women than in men.

  • Age. For GI tract NETs, the average age at diagnosis is 55 to 65. Children rarely develop NETs.

  • Other medical conditions. People with diseases that damage the stomach and reduce acid production have a greater risk of developing a NET of the stomach. In particular, people with pernicious anemia have a higher risk of developing a NET of the stomach. Pernicious anemia is a type of anemia in which a person has very large, malformed red blood cells.

  • Environment and diet. There are no known connections between the environment and what a person eats and the risk of developing a GI tract NET.

The next section in this guide is Symptoms and Signs. It explains what changes or medical problems a GI tract NET can cause. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will find out more about the changes and medical problems that can be a sign of a gastrointestinal tract neuroendocrine tumor (GI tract NET). Use the menu to see other pages.

What are the symptoms of a GI tract NET?

A GI tract NET often causes no symptoms in its early stages. This type of tumor is usually found by a surgeon during an unrelated surgery or on imaging (like a CT scan) for another condition.

People with a GI tract NET may experience the following symptoms or signs. The symptoms and signs of carcinoid syndrome and carcinoid crisis, which are conditions that a GI tract NET can cause, are also described. 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. However, the cause of a symptom or sign may be a medical condition that is not a GI tract NET.

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.

GI tract NETs may cause tumor-related symptoms. GI tract NETs are also the type of NET most likely to cause carcinoid syndrome (see below), which has its own set of symptoms.

People with a GI tract NET may experience the following tumor-related symptoms or signs:

  • Abdominal pain caused by blockage of the intestines

  • Diarrhea, especially in people who have carcinoid syndrome, had part of their intestines removed, or had their gallbladder removed.

  • Rash

  • Bright, red blood in the stool or dark, tarry stool. This is a sign of intestinal bleeding.

  • Scale-like skin sores, which can be a sign of pellagra, a severe deficiency of vitamin B3

  • Mental confusion or other problems, another sign of pellagra

  • Constipation

  • Nausea and vomiting

  • Weight loss that cannot be explained

  • Jaundice, which is when the skin and whites of the eyes turn yellow

  • Fatigue

Carcinoid syndrome

Carcinoid syndrome is the classic example of a functional NET and occurs most commonly in people with a small intestine NET. In carcinoid syndrome, the tumor produces hormones, mainly serotonin, that can cause symptoms. Serotonin is often measured in the urine, when it gets converted into 5-hydroxyindoleacetic acid (5-HIAA), and it is measured with a 24-hour urine collection. But 5-HIAA can be also measured in the blood. Not all people with a NET develop carcinoid syndrome.

People with carcinoid syndrome may experience 1 or more of the following symptoms or signs. It is important to note that these symptoms alone are not enough to diagnose carcinoid syndrome. Blood or urine tests to measure for suspected hormones are also needed to make a diagnosis.

  • Facial flushing, which is redness and a warm feeling over the face

  • Sweating

  • Diarrhea

  • Shortness of breath

  • Wheezing or asthma-like symptoms

  • Weakness

  • Fast heartbeat

  • Heart murmur

  • High blood pressure and significant fluctuations in blood pressure

  • Carcinoid heart disease, which is a scarring of the heart valves

Stress, strenuous exercise, and drinking alcohol may make these symptoms worse. Some foods may also trigger the symptoms of carcinoid syndrome, including foods high in:

  • Amines, such as aged cheeses, yeast extracts, tofu, sauerkraut, and smoked fish and meats

  • Serotonin, such as walnuts, pecans, plantains, bananas, and tomatoes

Carcinoid crisis

Carcinoid crisis is a term used when a person with a NET experiences severe, sudden symptoms of carcinoid syndrome. This usually happens due to extreme stress such as surgery. Carcinoid crisis primarily includes serious fluctuations in blood pressure and heart rate. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome. A carcinoid crisis may be prevented and successfully treated with octreotide, which is usually given through a vein before a medical procedure or surgery.

Managing symptoms of carcinoid syndrome

If a GI tract NET 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.

Below is information on how some of the symptoms of a GI tract NET can be managed, in addition to treatment with a somatostatin analog like octreotide or lanreotide. Be sure to talk with your health care team about the symptoms you experience, including any new symptoms or a change in symptoms.

  • Facial flushing. Avoid stress. Ask your doctor about specific substances and foods, including alcohol, that can cause facial flushing, so you can avoid them.

  • Wheezing. Ask your doctor about the use of a bronchodilator, a medication that relaxes the muscles in the lungs to make breathing easier.

  • Diarrhea. There can be many causes of diarrhea in people with a NET. If your diarrhea is caused by carcinoid syndrome, somatostatin analogs and telotristat ethyl (Xermelo) may help. If the diarrhea is caused by a problem with the absorption of bile acid, which occurs after removal of the gallbladder, ursodiol (Actigall, URSO 250, URSO Forte) may help. If a lack of pancreatic digestive enzymes has caused the diarrhea, replacement enzymes can help. Ask your doctor for specific recommendations for you.

  • Heart problems. Tell your doctor immediately if you think you may have a problem with your heart. Ask about the use of diuretics. Diuretics are drugs that lower blood pressure by helping the body get rid of water and sodium.

Learn more about managing common cancer symptoms and treatment side effects.

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.

Neuroendocrine Tumor of the Gastrointestinal Tract - Diagnosis

Approved by the Cancer.Net Editorial Board, 07/2022

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, a neuroendocrine tumor of the gastrointestinal tract (GI tract NET). They also do tests to learn if cancer has spread to another part of the body from where it started. If the 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 a tumor. 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 a GI tract NET is diagnosed

There are different tests used for diagnosing a GI tract NET. 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

Most GI tract NETs are found unexpectedly when people have an imaging scan or a medical procedure done for reasons unrelated to the tumor. Imaging scans show pictures of the inside of the body. For example, many NETs of the appendix are found during surgery to remove the appendix, called an appendectomy. NETs in the stomach and duodenum, which is the top of the small intestine, are usually found during an endoscopy (see below).

If a doctor suspects a GI tract NET, they will ask for a complete medical and family history and perform a thorough physical examination. In addition, the following tests may be used to diagnose a GI tract NET:

  • Blood/urine tests. The doctor may need samples of your blood and urine to check for abnormal levels of hormones and other substances. A hormone is a substance that can affect the actions of certain cells or organs. The hormone serotonin, a neurotransmitter involved in behavior and depression, is made by some NETs. Some blood tests check for tumor markers, which are proteins that can indicate whether or not a tumor is growing. Chromogranin A is a commonly measured tumor marker for NETs, but its measurement alone is not enough to make the diagnosis and it cannot be used alone to check whether a NET has come back, called a recurrence, or begun to grow or spread, called progression.

  • Biopsy. A biopsy is the only way to make a definite diagnosis, even if other tests can suggest that cancer is present. During biopsy, a small amount of tissue is removed for examination under a microscope and is normally required to make a diagnosis of NET. A pathologist analyzes the sample(s) removed during the biopsy. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

  • 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. Results of these tests can help determine your treatment options. This testing is less helpful in NETs than in other cancers.

  • Endoscopy. An endoscopy shows the lining of the upper digestive system using a thin, lighted, flexible tube called an endoscope. The person may be sedated as the tube is inserted 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 an abnormality is found, a biopsy will be performed.

    A colonoscopy is a type of endoscope that is inserted through the anus and into the colon. It can be used to diagnose a tumor in the lower section of the digestive tract.

  • Endoscopic ultrasound. An ultrasound uses sound waves to create a picture of internal organs. This procedure is often done at the same time as an upper endoscopy. During an endoscopic ultrasound, a machine that produces the sound waves, called a transducer, is inserted into the upper digestive tract through the mouth. The endoscopic ultrasound can show enlarged lymph nodes, which may help the doctor find a tumor or figure out the stage of the disease.

  • 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 image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Additionally, a CT scan is used to see if a tumor has spread to the liver and to find a NET in the retroperitoneal lymph nodes located in the area behind the abdomen. 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 and/or given as a liquid to swallow.

  • Magnetic resonance imaging (MRI). An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. MRI can be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein and/or given as a liquid to swallow.

  • Nuclear medicine imaging. During this test, a small amount of a radioactive drug, called a tracer, is injected into a patient’s vein. The body is then scanned to show where the radioactivity has built up in the body. However, the amount of radiation in the tracer is too low to be harmful. PET-CT scans are the type of imaging used for NETs. There are 3 types of tracers used in a PET scan: gallium-68 (68Ga) DOTATATE, copper-64 (64Cu) DOTATATE, and (18F) fluorodeoxyglucose (FDG).

    • 68Ga DOTATATE PET and 64Cu DOTATATE PET are forms of somatostatin receptor imaging and are primarily used to look at slow-growing NETs (grades 1 and 2, see Stages and Grades). Somatostatin receptors are proteins present on the surface of a NET cell that serve as a target for these imaging agents. When the 68Ga or 64Cu attaches to the somatostatin receptor and a picture is taken, cancer spots glow like light bulbs.

    • 18F FDG PET scan is another type of PET scan, but it does not use the somatostatin receptor. It is sometimes used for faster-growing neuroendocrine carcinomas (grade 3 NECs).

After diagnostic tests are done, your doctor will review the results with you. If the diagnosis is a tumor, these results also help the doctor describe it. 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.

Neuroendocrine Tumor of the Gastrointestinal Tract - Stages and Grades

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will learn about how doctors describe a tumor’s growth or spread. This is called the stage. In addition, you can read about how doctors describe how fast the tumor cells are growing and dividing, called the grade. Use the menu to see other pages.

READ MORE BELOW:

What is 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 of 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 cancer.

Return to top

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 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. For a GI tract NET, there are 4 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. Staging for a GI tract NET is based on the location of the primary tumor. The TNM system described below covers GI tract NETs found in these locations:

  • Stomach

  • Duodenum and ampulla of Vater (parts of the small intestine)

  • Jejunum and ileum (parts of the small intestine)

  • Appendix

  • Colon and rectum

Return to top

Tumor (T) – by organ

Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the size and location of the tumor. If the T is followed by a number in parentheses or the letter “m,” it indicates the number of tumors found or that multiple tumors are found. For example, a T2(3) would mean that the largest tumor found is T2 size and that there are 3 tumors. Tumor size is measured in centimeters (cm).

Stage may also be divided into smaller groups that help describe the tumor in even more detail. Specific tumor stage information is listed below.

Stomach

TX: The tumor cannot be evaluated.

T0 (T zero): There is no evidence of a tumor.

T1: The tumor is 1 cm or smaller and has grown into a deeper layer of cells in the stomach, the lamina propria or submucosa.

T2: The tumor is larger than 1 cm in size, or it has grown into the muscle layer of the stomach, called the muscularis propria.

T3: The tumor has grown through the muscularis propria and into the subserosa layer behind it.

T4: The tumor has grown into the layer of tissue on the outside of the stomach, called the serosa or peritoneum, or it has spread into nearby organs or structures.

Duodenum and ampulla of Vater (small intestine)

The duodenum is the first part of the small intestine after the stomach. The ampulla of Vater is a small bump in the duodenum where liquids from the bile ducts and pancreas enter the small intestine.

TX: The tumor cannot be evaluated.

T1: The tumor is 1 cm or smaller and only involves the top layer of mucus membrane or connective tissue on top of the muscle layer of the duodenum or it only involves the sphincter of Oddi. The sphincter of Oddi is a muscle that controls the flow of digestive fluids into the duodenum through the ampulla of Vater.

T2: The tumor is larger than 1 cm in size. Or it has grown into the muscle layer of the duodenum, called the muscularis propria, or through the sphincter of Oddi and into the duodenum.

T3: The tumor has grown into the pancreas or the tissue surrounding the pancreas.

T4: The tumor has grown into the peritoneum or other organs.

Jejunum and ileum (small intestine)

The jejunum and ileum are the parts of the small intestine that connect the duodenum to the large intestine.

TX: The tumor cannot be evaluated.

T0 (T zero): There is no evidence of a tumor.

T1: The tumor is 1 cm or smaller and only involves the top layers of tissue in the small intestine.

T2: The tumor is larger than 1 cm in size, or it has grown into the muscle layer of the small intestine.

T3: The tumor has grown through the muscle layer and into the tissues beyond, but it has not grown outside of the small intestine.

T4: The tumor has grown past the outside of the small intestine and into the peritoneum or other organs.

Appendix

TX: The tumor cannot be evaluated.

T0 (T zero): There is no evidence of a tumor.

T1: The tumor is 2 cm or smaller.

T2: The tumor is more than 2 cm but less than or equal to 4 cm in size.

T3: The tumor is larger than 4 cm, or it has grown into the layers of tissue on the outside of the appendix.

T4: The tumor has grown through the peritoneum or has invaded nearby organs or structures.

Colon and rectum

TX: The tumor cannot be evaluated.

T0 (T zero): There is no evidence of a tumor.

T1: The tumor is 2 cm or smaller and has grown past the top layer of cells and into the layers beneath, such as the lamina propria or submucosa.

  • T1a: The tumor is less than 1 cm in size.

  • T1b: The tumor is between 1 cm and 2 cm in size.

T2: The tumor has grown into the muscle (muscularis propria). Or it is more than 2 cm in size and has invaded the lamina propria or submucosa.

T3: The tumor has spread through the muscle and into the subserosal tissue behind it.

T4: The tumor has spread to the peritoneum or has invaded nearby organs or structures.

Return to top

Node (N) — for all parts of the GI tract

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

NX: The lymph nodes cannot be evaluated.

N0 (N zero): The cancer has not spread to regional lymph nodes.

N1: The cancer has spread to the regional lymph nodes. Jejunum and ileum only: The cancer has spread to fewer than 12 lymph nodes.

N2 (jejunum and ileum only): The cancer has spread to 12 or more lymph nodes and/or the masses are larger than 2 cm.

Return to top

Metastasis (M) — for all parts of the GI tract

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

M0 (M zero): There is no distant spread.

M1: There is distant metastasis.

  • M1a: The cancer has spread only to the liver.

  • M1b: The cancer has spread to at least 1 area beyond the liver, such as a lung, ovary, lymph node, the peritoneum, or bone.

  • M1c: The cancer has spread to both nearby and distant parts of the body.

Return to top

Stage groups for GI tract NETs

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

Stomach

Stage I: There is a small tumor, and it has not spread elsewhere (T1, N0, M0).

Stage II: The tumor is larger and has grown as far as the subserosa, which is behind the layer of muscle in the stomach. The cancer has not spread to the lymph nodes or elsewhere in the body (T2 or T3, N0, M0).

Stage III: The tumor is any size, and the cancer has spread to regional lymph nodes (any T, N1, M0). Or, the tumor has spread to the outside of the stomach, but the cancer has not spread to the lymph nodes or elsewhere (T4, N0, M0).

Stage IV: There is distant metastasis (any T, any N, M1).

Duodenum and ampulla of Vater (small intestine)

Stage I: There is a small tumor, and it has not spread elsewhere (T1, N0, M0).

Stage II: The tumor is larger than 1 cm, or it has grown as far as the pancreas. The cancer has not spread to the lymph nodes or elsewhere in the body (T2 or T3, N0, M0).

Stage III: The tumor is any size, and the cancer has spread to regional lymph nodes (any T, N1, M0). Or, the tumor has spread to the peritoneum or other organs, but the cancer has not spread to the lymph nodes or elsewhere (T4, N0, M0).

Stage IV: There is distant metastasis (any T, any N, M1).

Jejunum and ileum (small intestine)

Stage I: There is a small tumor, and it has not spread elsewhere (T1, N0, M0).

Stage II: The tumor is larger than 1 cm and has grown as far as the subserosa, which is behind the layer of muscle in the small intestine. The cancer has not spread to the lymph nodes or elsewhere in the body (T2 or T3, N0, M0).

Stage III: The tumor is any size, and the cancer has spread to regional lymph nodes (any T, N1 or N2, M0). Or, the tumor has spread to the peritoneum or to other organs or structures, but the cancer has not spread to the lymph nodes or elsewhere (T4, N0, M0).

Stage IV: There is distant metastasis (any T, any N, M1).

Appendix

Stage I: There is a tumor of 2 cm or less, and it has not spread elsewhere (T1, N0, M0).

Stage II: The tumor is larger than 2 cm and has grown as far as the membrane that connects the appendix to the abdomen wall. The cancer has not spread to the lymph nodes or elsewhere in the body (T2 or T3, N0, M0).

Stage III: The tumor is any size, and the cancer has spread to regional lymph nodes (any T, N1, M0). Or, the tumor has spread to the peritoneum or beyond, but the cancer has not spread to the lymph nodes or elsewhere (T4, N0, M0).

Stage IV: There is distant metastasis (any T, any N, M1).

Colon and rectum

Stage I: There is a tumor of 2 cm or less, and it has not spread elsewhere (T1, N0, M0).

Stage IIA: The tumor has grown into the muscle. Or it is more than 2 cm in size and has invaded the lamina propria or submucosa. The cancer has not spread (T2, N0, M0).

Stage IIB: The tumor has spread through the muscle and into the subserosal tissue behind it. The cancer has not spread to the lymph nodes or elsewhere in the body (T3, N0, M0).

Stage IIIA: The tumor has spread to the peritoneum or has invaded nearby organs or structures, but the cancer has not spread to the lymph nodes or elsewhere (T4, N0, M0).

Stage IIIB: The tumor is any size, and the cancer has spread to regional lymph nodes (any T, N1, M0).

Stage IV: There is distant metastasis (any T, any N, M1).

Recurrent: Recurrent cancer is cancer that has come back after treatment. 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.

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.

Return to top

Grade (G)

Doctors may also describe a GI tract NET by its grade (G), with a number from 1 to 3. For NETs, the grade describes how fast the tumor cells are growing and dividing, a process called mitosis.

To measure mitosis, the doctor counts the number of dividing cells seen in 10 high-power fields under a microscope. This is called the mitotic count. The doctor can also measure the Ki-67 index. Ki-67 is a protein in cells that increases as they prepare to divide. If there is a high percentage of cells in an area with Ki-67, it means that the cells are dividing rapidly. The Ki-67 index is an indicator of how quickly the tumor cells are multiplying.

The cancer’s grade may help the doctor predict how quickly the NET will grow and spread. In general, the lower the tumor’s grade, the better the prognosis. The grade scale below applies to all types of GI tract NETs.

GX: Grade cannot be evaluated.

G1: Mitotic count is less than 2, or Ki-67 index is less than 3.

G2: Mitotic count is between 2 and 20, or Ki-67 index is 3 to 20.

G3: Mitotic count is more than 20, or Ki-67 index is more than 20.

Grade 1 and grade 2 NETs tend to grow slowly. Grade 3 NETs tend to grow fast and are more aggressive. The final grade is based on whichever index (mitotic count or Ki-67) places the tumor in the highest grade category.

Return to top

Degree of differentiation

Degree of differentiation is also determined by looking at cells under a microscope. Differentiation refers to how much a cancer cell looks like a healthy cell.

Well-differentiated tumors look more like healthy cells and grow more slowly. Well-differentiated tumors can be grade 1, 2, or 3; the well-differentiated grade 3 category is newly recognized in the World Health Organization pathology system. (Please note this link takes you to a separate website.)

Poorly differentiated cells look less like healthy cells and grow more quickly. Poorly differentiated tumors are always grade 3 and are usually referred to as neuroendocrine carcinomas (NECs) and are divided into large-cell and small-cell types.

Return to top

Information about the tumor’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.

Neuroendocrine Tumor of the Gastrointestinal Tract - Types of Treatment

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will learn about the different types of treatments doctors use for people with a neuroendocrine tumor of the gastrointestinal tract (GI tract NET). 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 a GI tract NET. “Standard of care” means the best treatments known. Information in this section is based on medical standards of care for a GI tract NET in the United States. Treatment options can vary from one place to another.

When making treatment plan decisions, you are also 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 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 a GI tract NET is treated

In cancer care, different types of doctors who specialize in cancer, called oncologists, often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team and is especially important for people with a NET. Your team may include different types of oncologists, which are doctors who specialize in cancer, a gastroenterologist, or GI doctor, who specializes in the digestive system, and other physicians. 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 stage and grade of cancer, possible side effects, and the patient’s preferences and overall health. Take time to learn about all of 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 a GI tract NET because there are different treatment options. Learn more about making treatment decisions.

The common types of treatments used for a GI tract NET are described below, followed by an outline of treatment options by stage. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care.

READ MORE BELOW:

Active surveillance

Active surveillance, which is also called watchful waiting or watch-and-wait, may be recommended sometimes. This approach is used most often for low-grade NETs that may grow slowly and not spread or cause problems for many months or years. With this approach, the tumor is closely monitored with regular tests, which may include:

  • Imaging tests, usually computed tomography (CT) scans or sometimes magnetic resonance imaging (MRI; see Diagnosis)

  • Blood tests

  • Physical examinations

Active treatment usually only begins if the tumor shows signs of growing or spreading.

Return to top

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. A surgical oncologist is a doctor who specializes in cancer surgery.

Completely removing the entire tumor is the standard treatment for a GI tract NET, when possible. Most localized GI tract NETs are successfully treated with surgery alone. The surgeon will usually remove some tissue surrounding the tumor, called a margin, in an effort to leave no traces of cancer in the body.

When completely removing the tumor is not possible, debulking surgery is sometimes recommended. Debulking surgery removes as much of the tumor as possible and may provide some relief from symptoms, but it generally does not cure a NET. Debulking surgery may be recommended if the tumor has spread to other parts of the body, called metastatic disease. If no surgery is possible, it is called an “inoperable” or "unresectable" tumor. In these situations, the doctor will recommend another type of treatment.

People who have carcinoid syndrome are at risk of experiencing a carcinoid crisis during surgery and other procedures (see Symptoms and Signs). To avoid major complications from a carcinoid crisis, the anesthesiology team must be fully aware of this risk before surgery, so they can have treatment on hand to control the symptoms. This treatment is usually a somatostatin analog.

Before surgery, talk with your health care team about the possible side effects from the specific surgery you will have. Learn more about the basics of cancer surgery.

Surgical options for a GI tract NET include:

  • Local excision. During this operation, the surgeon removes the tumor and some surrounding healthy tissue. Most localized tumors can be surgically removed through a skin incision. A rectal NET may be removed through the anus. Other GI tract NETs can sometimes be removed using an endoscope (see Diagnosis).

  • Partial gastrectomy. This surgery removes part of the stomach.

  • Esophagectomy. This procedure is the removal of all or part of the esophagus. The esophagus is the tube that connects the throat to the stomach.

  • Small bowel resection. The small bowel is another term for the small intestine. This surgery removes parts of the small intestine.

  • Appendectomy. Appendectomy is surgery to remove the appendix.

  • Segmental colon resection or hemicolectomy. This surgery removes one-third to one-half of the colon, including nearby blood vessels and lymph nodes.

  • Low anterior resection. During this surgery, a portion of the upper part of the rectum is removed.

  • Abdominoperineal resection. This surgery is used for a large tumor located in the lower part of the rectum. During the operation, the surgeon removes the anus, rectum, and part of the colon. After surgery, a colostomy may be created to carry waste out of the body. A colostomy is an opening from the colon to the outside of the body.

  • Liver resection. This operation removes cancer that has spread to the liver. The goal of this surgery is not to eliminate the cancer, but it often helps relieve or reduce the symptoms of carcinoid syndrome.

Return to top

Therapies using medication (updated 12/2023)

The treatment plan may include medications to destroy tumor cells. When these medicines are given by mouth, through the bloodstream, or as an injection into the muscle or underneath the skin, these are called "systemic therapies" because they reach tumor cells throughout the body. This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication. 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 a GI tract NET include:

  • Somatostatin analogs (octreotide or lanreotide)

  • Chemotherapy

  • Targeted therapy

  • Peptide receptor radionuclide therapy (PRRT)

  • Immunotherapy

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.

Somatostatin analogs

Somatostatin is a hormone in the body that controls the release of several other hormones, such as insulin, glucagon, and other hormones. It also suppresses the release of gastrointestinal hormones. Somatostatin analogs are drugs that are similar to somatostatin and are used to control the symptoms created by the hormones released by a GI tract NET. Somatostatin analogs can also slow the growth of a NET, although they do not generally shrink the tumors.

68Ga DOTATATE or 64Cu DOTATATE PET scans (see Diagnosis) are used to determine whether a somatostatin analog will be part of the treatment plan.

There are 2 somatostatin analogs currently used to treat NETs:

  • Octreotide is available in 2 forms. Short-acting octreotide is given under the skin (subcutaneous) and long-acting is given as an injection into the muscle (intramuscular or IM).
  • Lanreotide is given as a long-acting subcutaneous injection.

The most common side effects of somatostatin analogs are high blood sugars, the development of gallstones, and mild digestive system upset, such as bloating and nausea. Talk with your doctor about what to expect and how side effects will be managed.

Return to top

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells. Chemotherapy for a GI tract NET is most often used when the tumor has spread to other organs or is causing severe symptoms.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time. Common drugs for a GI tract NET include:

  • Capecitabine (Xeloda) and oxaliplatin (Eloxatin), which is a combination called CAPEOX.
  • Fluorouracil (5-FU) can also be used with oxaliplatin, which is a combination called FOLFOX.
  • Carboplatin or cisplatin combined with etoposide, all available as generic drugs, given intravenously. This regimen is usually used only for poorly differentiated disease (carcinomas) or very rapidly progressing well-differentiated grade 3 NETs.

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. Not all chemotherapies cause hair loss. These side effects usually go away after treatment is finished.

Learn more about the basics of chemotherapy.

Return to top

Targeted therapy

Targeted therapy is a treatment that targets the tumor’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.

The U.S. Food and Drug Administration (FDA) has approved everolimus (Afinitor) for the treatment of advanced GI tract NETs. This treatment can help slow down the growth of these tumors in some people, but it does not usually shrink tumors. Side effects include mouth sores, lowered blood counts, and fatigue. Talk with your doctor about possible side effects and how they can be managed.

Other targeted therapies for GI tract NETs are being studied in clinical trials. They include drugs that interfere with new blood vessel formation or with specific survival pathways of cancer cells.

Return to top

Peptide receptor radionuclide therapy (PRRT)

A treatment called 177Lu-dotatate (Lutathera) may be used to treat advanced GI tract NETs. The broader term to describe this treatment is peptide receptor radionuclide therapy (PRRT). This is a radioactive drug that works by binding to a tumor cell’s somatostatin receptors, which may be present on certain tumors. After binding to the receptors, the drug enters the cell, allowing radiation to damage the tumor cell.

Common side effects include low levels of white blood cells, red blood cells, and platelets; high blood sugar levels; nausea and vomiting; and fatigue. Talk with your doctor about ways these can be avoided or managed. There are also rare but serious risks of kidney problems and secondary blood cancers, such as myelodysplastic syndrome and leukemia. Other types of PRRT for GI tract NETs are being studied in clinical trials. 

Return to top

Immunotherapy

Immunotherapy uses the body's natural defenses to fight cancer by improving your immune system’s ability to attack cancer cells. Interferon alfa-2b (Intron A) is a type of immunotherapy that has been used to treat NETs, but it is not currently recommended.

Learn more about the basics of immunotherapy.

Return to top

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist.

The most common type of radiation treatment for a GI tract NET is called external-beam radiation therapy, which is radiation given from a machine outside the body. There are multiple forms of external-beam radiation therapy, such as stereotactic body radiotherapy (SBRT), which is also called stereotactic ablative radiotherapy (SABR). It is most often used as part of supportive care to relieve symptoms, such as pain, that are caused by cancer that has spread to the bone and other areas of the body (see “Physical, emotional, and social effects of cancer,” below).

Patients receiving radiation therapy may experience fatigue during treatment, and the treated area may become red and dry. Radiation therapy to the chest or neck may cause a sore throat, dry cough, or shortness of breath. Most side effects go away after the treatment is finished. Learn more about the basics of radiation therapy.

Return to top

Liver-directed treatment

If cancer has spread to the liver, the treatments below may be used. These procedures are usually performed by an experienced interventional radiologist and may require an overnight hospital stay. Side effects include pain around the liver, fever, and higher levels of liver enzymes as measured by blood tests for a few days or weeks after treatment.

Radiofrequency ablation (RFA). RFA destroys a tumor by heating it with an electric current. It is usually used for small liver metastases and does not work well on larger tumors.

Hepatic artery embolization. This procedure blocks the tumor’s blood supply by sealing off the blood vessels leading to the tumor. If embolization is done by itself, it is called bland embolization. When combined with chemotherapy, it is called chemoembolization. When it is combined with radiation therapy, it is called radioembolization.

It is not yet clear if any form of embolization treatment is more effective than the other. Ongoing clinical trials are evaluating and comparing different types of embolization. These treatments are usually used for people with metastatic disease that mostly affects the liver, in particular those who have symptoms caused by the size of the tumor or by hormones produced by the tumor. If this treatment is recommended for you, talk with your doctor about possible side effects and how they can be managed.

Return to top

Physical, emotional, social, and financial effects of a NET

A NET 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 tumor.

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 tumor, may receive this type of care. And it often works best when it is started right after a diagnosis. People who receive palliative and supportive care along with treatment for the tumor often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.

Supportive 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 some people, such as those with lung disease, heart disease, or other specific medical conditions, surgery cannot successfully treat the tumor. In these cases, palliative surgery to relieve symptoms may be helpful. Palliative surgery is often used together with radiation therapy.

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.

Medical 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 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.

Return to top

Treatment by stage of a GI tract NET

Different treatments may be recommended for each stage of a GI tract NET. The general options by stage are described below. For more detailed descriptions, see "How a GI tract NET is treated," above. Your doctor will work with you to develop a specific treatment plan based on your specific diagnosis and needs. Clinical trials may also be a treatment option for each stage.

Stages I, II, and III

  • Stomach. A localized NET of the stomach can often be completely removed through an endoscope. A tumor larger than 2 cm is removed with a margin of surrounding stomach tissue through an incision, or cut, in the abdomen. Treatment plans for NETs of the stomach also depend on whether they are associated with the secretion of gastrin and if an endoscopy finds inflammation of the stomach cells, called atrophic gastritis. This information helps determine the specific subtype of the tumor: type 1, 2, or 3. This can be a complicated diagnosis, and it is important to work closely with your doctor on selecting the best treatment.

  • Small intestine/large intestine (colon). Surgery to remove the tumor, surrounding tissue, and lymph nodes is the most common treatment for a NET in the small and large intestine.

  • Appendix. An appendectomy is usually the only treatment needed for a NET smaller than 2 cm. For a tumor larger than 2 cm, the removal of about one-third of the colon next to the appendix and nearby blood vessels and lymph nodes is often needed.

  • Rectum. A rectal NET smaller than 1 cm is often removed with an endoscopy. A tumor larger than 1 cm is usually removed using the same surgical procedure that is used for rectal cancer. This involves removing some healthy colorectal tissue and some of the nearby lymph nodes.

Stage IV (updated 12/2023)

If a NET spreads to another part in the body from where it started, doctors call it stage IV or 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 the treatments described above. Your doctor will recommend treatments based on several factors, such as the grade of the tumor, the degree of differentiation, if it is functional or non-functional, and if the tumor tests positive for somatostatin receptors. Read more about grade and degree of differentiation.

Somatostatin analogs, like octreotide or lanreotide, chemotherapy, targeted therapy, and PRRT are often used to treat stage IV GI tract NETs. These treatments may be used alone or in combination. If a person has carcinoid syndrome, somatostatin analogs are usually the primary treatment for many people with a well-differentiated, grade 1 or grade 2 metastatic NET. If somatostatin analogs do not stop the tumor growth, then PRRT or everolimus may be recommended. For people with well-differentiated, grade 3 disease, the treatment plan may include somatostatin analogs, chemotherapy, and/or PRRT.

Surgery is sometimes used to relieve symptoms rather than eliminate the cancer. If distant metastases are not causing symptoms, then surgery may not be needed. Radiation therapy may also be offered to help relieve symptoms from stage IV GI tract NETs, such as cancer that has spread to the bone.

Participation in clinical trials is encouraged. 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.

The information in this section is based in part on the ASCO guideline, “Systemic Therapy for Tumor Control in Metastatic Well-differentiated Gastroenteropancreatic Neuroendocrine Tumors.” Please note that this link will take you to a different ASCO website.

Return to top

Remission and the chance of recurrence

A remission is when a tumor 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 NET 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 NET does return. Learn more about coping with the fear of recurrence.

If the NET returns after the original treatment, it is called a recurrent NET. 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 GI tract NETs. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

People with a recurrent tumor 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.

Return to top

If treatment does not work

Recovery from a GI tract NET is not always possible. If the tumor cannot be cured or controlled, the disease may be called advanced or incurable.

This diagnosis is stressful, and for some people, an advanced NET 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 disease 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.

Return to top

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 a GI tract NET. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 07/2022

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 a neuroendocrine tumor of the gastrointestinal tract (GI tract NET). 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 GI tract NETs. 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 contribute to the progress in treating a GI tract NET. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with a GI tract NET.

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.” 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 if 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 GI tract NETs, learn more in the Latest Research section.

Cancer.Net offers more 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 a GI tract NET, 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.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials in another section of this website.

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

Neuroendocrine Tumor of the Gastrointestinal Tract - Latest Research

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will read about the scientific research being done to learn more about neuroendocrine tumors of the gastrointestinal tract (GI tract NETs) and how to treat them. Use the menu to see other pages.

Doctors are working to learn more about GI tract NETs, ways to prevent them, how to best treat them, and how to provide the best care to people diagnosed with this type of tumor. 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.

  • New treatment approaches. Currently, many clinical trials for GI tract NETs are studying new drugs and different drug combinations. New approaches to treatment using medications include targeted therapy, as described in Types of Treatment.

  • Genetics. As described in Risk Factors, family history of multiple endocrine neoplasia type 1 (MEN1) may play a role in an individual’s risk for developing a GI tract NET. Researchers are investigating MEN1 to learn more about this hereditary risk factor.

  • Palliative and supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current treatments for a GI tract NET 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 GI tract NETs, 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 a GI tract NET and its treatment can bring. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of a neuroendocrine tumor of the gastrointestinal tract (GI tract NET) and its treatment. Use the menu to see other pages.

Every medical 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 tumor. This can make it hard to predict how you will feel during treatment.

READ MORE BELOW:

As you prepare to start 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 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 GI tract NETs 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 tumor’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.

Return to top

Coping with emotional and social effects

You can have emotional and social effects after a diagnosis of a tumor. 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 their diagnosis.

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.

Return to top

Coping with the costs of medical care

Treatment for a GI tract NET can be expensive. Costs may be a source of stress and anxiety for people with a NET 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 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.

Return to top

Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their diagnosis. These differences are called “health 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.

Return to top

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 a tumor.

Return to top

Caring for a loved one with a NET

Family members and friends often play an important role in taking care of a person with a GI tract NET. 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 in English or Spanish.

Return to top

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.

Return to top

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

Neuroendocrine Tumor of the Gastrointestinal Tract - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will read about your medical care after treatment for a neuroendocrine tumor of the gastrointestinal tract (GI tract NET) is completed and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with a GI tract NET does not end when active treatment has finished. Your health care team will continue to check that the tumor 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. This is important because a GI tract NET can recur even several years after treatment. During this time, it is important to tell your doctor about any new symptoms as soon as you notice them, such as fatigue, breathing problems, or pain in any part of the body.

Patients and families should be aware that a GI tract NET grows slowly and may be similar to a chronic illness. This means the patient will receive treatment and follow-up care in cycles on an ongoing basis. Learn more about living with chronic cancer.

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 tumor has come back. A tumor recurs because small areas of tumor 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.

If the NET does return, the most common place for a NET recurrence to develop is in the GI tract, specifically the liver. 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 NET 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. For example, some people experience late effects after being treated with octreotide, such as thyroid and gallbladder problems. 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 treatment you received and develop a survivorship care plan after 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 tumor, treatments received, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your medical care will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with them and with all future health care providers. Details about your 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 tumor diagnosis. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - Survivorship

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will read about how to cope with challenges in everyday life after being diagnosed with a cancerous tumor. 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 a tumor after finishing treatment.

  • Living with, through, and beyond a tumor. According to this definition, 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 a tumor. 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 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 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 health 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 a neuroendocrine tumor of the gastrointestinal tract (GI tract NET) 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 a NET, 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 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 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 health care team. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 07/2022

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 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

  • Where in my gastrointestinal (GI) tract is the neuroendocrine tumor (NET) located?

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

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

  • What is the grade? What does this mean?

  • How much experience do you have treating this type of tumor?

  • Do I have a functional NET or carcinoid syndrome? What does this mean?

  • Is my heart affected by the tumor? How will you monitor my heart’s health and performance?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

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

  • What treatment plan do you recommend? Why?

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

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

  • What medications will reduce these side effects?

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

  • Who will lead 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 treatment begins?

  • If I’m worried about managing the costs of medical 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

  • Can surgery remove the entire tumor? Why or why not?

  • If not, can surgery be done to debulk the tumor? What is the benefit of this?

  • What type of surgery do you recommend?

  • How long will the operation take?

  • How long will I need to be in the hospital?

  • Can you describe what my recovery from surgery will be like?

  • 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

  • Which medication(s) do you recommend?

  • What is the goal of this treatment?

  • How will the treatment be given? Through an IV, orally, or injected?

  • How often will I receive this therapy? For how long?

  • Will I receive it 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 this treatment?

  • What can be done to prevent or manage these side effects?

Questions to ask about having radiation therapy

  • What type of radiation therapy do you recommend?

  • What is the goal of radiation therapy?

  • How many treatments will I need, and how long will each one take?

  • 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 radiation therapy?

  • What can be done to prevent or manage these side effects?

Questions to ask about planning follow-up care

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

  • What long-term side effects or late effects are possible based on the 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 lead 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 more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Gastrointestinal Tract - Additional Resources

Approved by the Cancer.Net Editorial Board, 07/2022

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about medical care and treatment. This is the final page of Cancer.Net’s Guide to Neuroendocrine Tumor of the Gastrointestinal Tract (GI tract NET). Use the menu to go back and review other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with 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:

This is the end of Cancer.Net’s Guide to Neuroendocrine Tumor of the Gastrointestinal Tract. Use the menu to choose a different section to read in this guide.