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Gastrointestinal Stromal Tumor - GIST - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Gastrointestinal Stromal Tumor. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

The gastrointestinal (GI or digestive) tract includes the:

  • Esophagus

  • Stomach

  • Gallbladder and bile ducts

  • Liver

  • Pancreas

  • Small intestine

  • Colon

  • Rectum

  • Anus

  • Lining of the gut

The GI tract plays a central role in digesting food and liquid and in processing waste. When you swallow food, it is pushed down a muscular tube called the esophagus and enters the stomach. The muscles in the stomach mix the food and release gastric juices that help break down and digest the food.

The food then moves into the small intestine, or small bowel, for further digestion before entering the large intestine. The large intestine helps remove waste from the body. The colon makes up the first 5 to 6 feet of the large intestine. The rectum makes up the last 6 inches, ending at the anus.

About gastrointestinal stromal tumor (GIST)

A tumor begins when healthy cells change and grow uncontrollably, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread. A tumor can start in any part of the GI tract. There are several different types of GI tumors, including gastrointestinal stromal tumor (GIST).

GISTs are different from more common types of GI tumors because of the type of tissue in which they start. GISTs belong to a group of cancers called soft-tissue sarcomas. Soft-tissue sarcomas develop in the tissues that support and connect the body. The sarcoma cells resemble the cells that hold the body together, including fat cells, muscles, nerves, tendons, joints, blood vessels, and lymph vessels.

Doctors used to think that GISTs were muscle or nerve tumors. However, research shows that GIST begins in “pacemaker” cells (or their relatives) found in the walls of the GI tract. Called interstitial cells of Cajal (ICC), they send signals to the GI tract to help move food and liquid through the digestive system.

It is important to note that GIST can be cancerous. It may be hard for the doctor to tell whether a GIST is likely to come back after being surgically removed. As a result, the doctor will look at many factors to determine the best treatment, including the tumor’s:

  • Size

  • Number of dividing cells

  • Genetic makeup

  • Primary location

  • Whether it has already spread

  • Whether the tumor ruptured, either on its own or as a result of surgery

More information about these factors and GIST treatment options are outlined in other sections of this guide.

Looking for More of an Overview?

If you would like additional introductory information, watch this short video led by an ASCO expert in sarcoma. The video provides basic information and areas of research. Please note this link will take you to another section on Cancer.Net.

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

Gastrointestinal Stromal Tumor - GIST - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will find information about how many people are diagnosed with this type of tumor each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

Each year, approximately 4,000 to 5,000 adults in the United States will be diagnosed with a GIST. About 60% of GISTs begin in the stomach, and approximately 30% develop in the small intestine. The remaining types of GISTs mostly start in the rectum, colon, and esophagus.

The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for people with a GIST depends on several factors, including specific biologic characteristics of the tumor, the type of treatment given, and the risk of the tumor coming back after treatment. 

The American Cancer Society’s most recent data available is from 2003 to 2009, and this means that these survival rate estimates do not show the results of better diagnosis or treatment available since then. Based on that data, the overall 5-year survival rate of people diagnosed with a malignant GIST has been estimated to be 76%. If the tumor has not spread from the organ where it started, the 5-year survival rate is 91%. If the cancer has spread to a distant part of the body when it was first diagnosed, the survival rate has been estimated at 48%.

It is important to remember that statistics on how many people survive this type of tumor are an estimate. The estimate comes from data based on thousands of people with GIST in the United States each year. So, your own risk may be different. Doctors cannot say for sure how long anyone will live with a GIST. Learn more about understanding statistics.

Source: American Cancer Society website (2016).

The next section in this guide is Risk Factors. It explains what factors may increase the chance of developing this disease. Or, use the menu to choose another section to continue reading this guide.  

Gastrointestinal Stromal Tumor - GIST - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of tumor. To see other pages, use the menu on the side of your screen.

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

The majority of GISTs develop sporadically, which means for no known reason. Doctors are rarely able to find a specific risk factor for patients diagnosed with a GIST, other than the hereditary syndromes discussed below. However, the following factors may raise a person’s risk for developing a GIST:

  • Age. GIST most often occurs in people older than 50.

  • Gender. GIST is slightly more common in men than in women.

  • Hereditary risk. GIST rarely run in families, and having a family member with a GIST seldom increases your risk of developing the disease. Hereditary syndromes that can increase the risk of GIST include familial GIST, neurofibromatosis Type 1 (NF1), and Carney-Stratakis dyad.

  • Genetics. Most often GIST develops because of genetic mutations or changes. This includes non-hereditary tumors. The two most common genes affected are called KIT and platelet-derived growth factor receptor alpha (PDGFRA). A tumor may have a different mutation to these genes, some of which are more harmful than others. The prognosis of people with different mutations is often different. The tumors of patients with GIST that do not have mutations recognized by current tests are called “wild type” (WT) tumors.

Increasingly, researchers are finding other mutations thought to cause GIST. One is a protein called succinate dehydrogenase (SDH). Another is BRAF, a gene occasionally changed in people with melanoma or colorectal cancer.

Testing for these mutations may be available at hospitals that specialize in treating a GIST. Researchers continue to look for specific genes and other syndromes that may be related to the development of GIST and which may be used to help choose a patient’s treatment options.

Because no non-hereditary, preventable risk factors have been found, there is no good way to prevent GIST.

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

Gastrointestinal Stromal Tumor - GIST - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

People with GIST often do not experience any specific symptoms or signs. When symptoms do occur, they may be vague. Or these symptoms may be caused by a medical condition that is not a tumor.

  • Pain or discomfort in the abdomen

  • A mass in the abdomen that you can feel with your hand

  • Bowel obstruction

  • Nausea and vomiting

  • Vomiting blood or having blood in the stool

  • Fatigue due to anemia, which is a low red blood cell count and is often caused by bleeding of the GI tract

Sometimes a GIST is discovered by chance when a person has an imaging test for an unrelated concern or condition.

If you are concerned about one or more of the symptoms or signs on this list, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If a GIST is diagnosed, relieving symptoms remains an important part of your medical care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis and it explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Gastrointestinal Stromal Tumor - GIST - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

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

Doctors use many tests to diagnose a tumor. They want to find out if the tumor is cancerous, and if it is, learn whether the tumor has spread to another part of the body, called metastasis. Some tests may also determine which treatments may be the most effective. Imaging tests may be used to find out whether the cancer has spread.

Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition

  • Type of tumor suspected

  • Signs and symptoms

  • Previous test results

In addition to a physical examination, the following tests may be used to diagnose GIST or determine the best treatment. Not all tests listed will be used for every person.

  • Computed tomography (CT or CAT) scan. A CT scan is a test commonly used to diagnose GIST. A CT scan creates a 3-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size or help doctors determine whether the cancer has spread to the liver or gut lining. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow.

  • Fecal occult blood test. This test detects blood that can’t be seen in the stool, which can be caused by cancer in the GI tract. A small amount of stool is placed on a plastic slide or special paper. Then the stool is tested in the doctor's office or a laboratory. 

  • Barium swallow and x-ray. An x-ray is a way to create a picture of the structures inside of the body, using a small amount of radiation. X-rays may be taken of the esophagus and stomach, which are referred to as the upper GI tract. In a barium swallow, x-rays are taken after a patient drinks a substance called barium. The barium outlines the GI tract on the x-ray and helps the doctor see a tumor or other abnormal areas. During a barium enema, the doctor looks at the lining of the colon and rectum on an x-ray after the barium has been given through the anus.

  • Endoscopy. An endoscopy allows the doctor to see the inside of the stomach or large bowel. The patient may be sedated. Sedation is giving medication to make a patient more relaxed, calm, or sleepy. With upper endoscopy, the doctor inserts a thin, lighted tube called a gastroscope through the mouth, down the esophagus, and into the stomach and small bowel. With lower endoscopy, the scope is put in through the anus. If abnormal areas are found, the doctor can remove a sample of tissue and check it for evidence of cancer (see Biopsy, below). A special type of test called a capsule endoscopy involves swallowing a small camera. This allows very clear viewing of the small intestine. It is rarely used but can be useful when other diagnostic methods fail to find the cause of GI bleeding.

  • Endoscopic ultrasound. This test is similar to an endoscopy, but the scope has a small ultrasound probe on the end. The probe uses sound waves to create an image of the stomach or rectum and nearby organs. The ultrasound image helps doctors determine if or how far the cancer has spread into nearby tissues.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also 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 or given as a liquid to swallow.

  • Positron emission tomography (PET) scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body. Doctors often use PET scans to add to the information gathered from the CT scan, MRI, or physical examination. Doctors may also use the scans to show activation of the disease (called PET flare) or to measure how well treatment is working.

  • Biopsy. Your doctor may recommend a biopsy if a mass suspected of being a GIST is found. A biopsy is the removal of a small amount of tissue for examination under a microscope. The type of biopsy performed will depend on the location of the tumor. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. A pathologist then analyzes the sample. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

    Sometimes, your doctor may recommend surgery even if the biopsy results do not indicate cancer. That’s because a biopsy for GIST is not always definitive. A patient may need the entire tumor removed and biopsies done in several locations to make a diagnosis. However, it is very important that you see a team of medical and surgical oncologists experienced in the treatment of GIST before a big surgery.

  • Tumor pathology. A pathologist makes a diagnosis of GIST by looking at the shape and appearance of tumor cells, doing tests for a protein called KIT and other tumor markers, and finding the mitotic count (a measure of actively dividing cells; see Stages for more information).

  • Molecular testing of the tumor. Your doctor may recommend running additional laboratory tests on a tumor sample to identify specific genes, proteins, and other factors unique to the tumor. Results of these tests will help decide whether your treatment options include a type of treatment called targeted therapy (see Treatment Options).

    Studies have shown that depending on the tumor’s specific gene mutations, some patients may need higher doses of a drug called imatinib (Gleevec) to best control the tumor. Otherwise, they might not benefit from taking this drug at all. Testing each patient’s tissue for genetic mutations can also help doctors target the specific mutation causing the tumor to grow (see Treatment Options). This testing is clinically available and used in research studies. Treatment for a GIST can start before this type of testing is completed. However, the results of this test may change the treatment plan after it starts.

After your diagnostic tests, your doctor will review all of the results with you. If the diagnosis is GIST, some of these results also help the doctor describe how advanced the tumor is; this is called staging.

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

Gastrointestinal Stromal Tumor - GIST - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will learn about how doctors describe a tumor’s growth or spread. This is called the stage. To see other pages, use the menu on the side of your screen.

Staging is a way of describing where the tumor 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 tumor's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

For other types of GI tumors, the most common staging tool used is called the TNM system. TNM is an abbreviation for tumor (T), node (N), and metastasis (M). However, the use of the TNM system for GIST is not required. Instead, doctors look at different factors to determine a patient’s prognosis and the specific risk of how aggressive an individual tumor will be. Specifically, doctors want to figure out how quickly the GIST may grow and the chance the tumor will come back, or recur, after surgery.

Doctors commonly use the factors listed below to determine how aggressive a GIST that has been removed could be:

  • The size of the tumor

  • The mitotic count, which describes the number of dividing cells

  • The location where the tumor started

A GIST that has spread to distant areas of the body is considered higher risk because of the likelihood of it coming back.

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Gastrointestinal Stromal Tumor - GIST - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will learn about the different ways doctors use to treat people with this type of tumor. To see other pages, use the menu on the side of your screen.

This section outlines treatments that are the standard of care (the best known treatments available) for GIST. When making treatment plan decisions, doctors also encourage patients to consider clinical trials as an option. A clinical trial is a research study to test a new approach to treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Your doctor can help you review all treatment options.

For more information, see the About Clinical Trials and Latest Research sections.

Treatment overview

In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. Cancer care teams also include a variety of other health care professionals, including physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

Below are descriptions of the most common treatment options for GIST. Treatment options and recommendations depend on several factors, including:

  • The type and stage of tumor

  • Possible side effects

  • The patient’s preferences

  • The patient’s overall health

Your care plan may also include treatment for symptoms and side effects, an important part of your care. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. For patients with localized GIST, surgery is the standard treatment and should be performed whenever possible. Often the tumor can be completely removed through surgery. A surgical oncologist is a doctor who specializes in treating cancer by surgery.

Learn more about the basics of cancer surgery.

If the tumor is large or has spread to nearby organs, you may first receive imatinib (Gleevec; see Kinase inhibitors below). The purpose of this approach is to shrink the tumor to make it more likely to be surgically removed. The surgeon will eventually try to remove the entire tumor to reduce the risk that the tumor will recur or block the GI tract.

To remove the entire tumor, it is possible that the surgeon may have to remove parts of nearby organs, depending on the tumor’s location. The removal of lymph nodes is not generally needed because GISTs do not often spread to the lymph nodes. A tumor that cannot be removed using surgery is called unresectable. The doctor will then recommend a different type of treatment.

After surgery, patients who may have a high risk of recurrence often receive imatinib for at least 3 years. This type of post-surgical treatment is called adjuvant therapy.

Targeted therapy

Tyrosine kinase inhibitors (TKIs)

TKIs are drugs that target specific proteins called kinases (KY-nayz-es) that contribute to the tumor’s growth and survival. This type of targeted treatment blocks the growth and spread of tumor cells while limiting damage to healthy cells.

Recent studies show that not all tumors have genetic changes in the same kinases. 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, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them. Note the following drugs are listed in alphabetical order, not the order of treatment.

Imatinib (Gleevec)

This was the first targeted therapy approved for GIST by the U.S. Food and Drug Administration (FDA). It is often the first drug used to treat GIST. Since this drug became available, the prognosis for patients with a GIST improved considerably. It is usually given before or after surgery, as described above under Surgery.

Imatinib is usually given for a long time, sometimes indefinitely. Research has been conducted to find out how long imatinib should be given after surgery to help delay or prevent a recurrence, and imatinib is the only drug approved for this use. If a GIST has spread to other parts of the body, imatinib is taken for the rest of the patient’s life to help control the tumor.

The usual dose of imatinib is 400 milligrams (mg) daily. For some patients, the dose may be raised to 800 mg daily, especially for those who have an exon 9 genetic mutation in the KIT gene. This mutation may occur when the tumor starts in the small bowel or colon.

The most common side effects of imatinib are fluid accumulation, rash, nausea, diarrhea, fatigue, and minor muscle aches. Serious but relatively rare side effects include bleeding and inflammation of the liver. Many of these side effects can be managed with the help of the health care team. Also, some side effects get better over time. People who have serious side effects may take a reduced dose of imatinib and still benefit from it. If you decide to stop treatment because of side effects, talk with your health care team to learn whether this is the best option.

Regorafenib (Stivarga)

Regorafenib (Stivarga) is a TKI that works in many different ways to slow tumor growth. It was approved in 2013 for people with later stage GIST that cannot be surgically removed and when both imatinib and sunitinib did not work or caused severe side effects.

The side effects of regorafenib include hand-foot syndrome, high blood pressure, and diarrhea.

Sunitinib (Sutent)

Sunitinib (Sutent) is a TKI that also stops angiogenesis, which is the process of making new blood vessels. Because a tumor needs the nutrients delivered by these blood vessels to grow and spread, the goal of anti-angiogenesis therapies is to “starve” the tumor. The FDA approved sunitinib for treating GIST when the tumor continues to grow even after treatment with imatinib. Sunitinib may also be used when the side effects of imatinib are too serious even at lower doses.

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

Learn more about the basics of targeted treatments.

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. Learn more about your prescriptions by using searchable drug databases.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy.

A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy is not often used for to treat people with GIST. However, it may be used as a palliative treatment to relieve pain, such as bone pain, or to stop bleeding. Radiation therapy may damage healthy cells as well as tumor cells. Side effects from radiation therapy include: tiredness, mild skin reactions, upset stomach, and loose bowel movements.

Most side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. However, standard chemotherapy is not effective for treating GIST and should not be used.

Getting care for symptoms and side effects

GIST and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the tumor, an important part of care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care. Palliative care includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process.

People often receive treatment for the tumor and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies.

You may also receive palliative treatments similar to those meant to eliminate the cancer, such as drug therapy, surgery, or radiation therapy. Talk with your doctor about the goals of each treatment in your treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it is addressed as quickly as possible.

Learn more about palliative care.

Metastatic GIST

If a GIST has spread to another location in the body, it is called metastatic. Patients with metastatic GIST are encouraged to talk with doctors who are experienced in treating this type of tumor as early as possible to develop a treatment plan. Learn more about getting a second opinion before starting treatment, so you are comfortable with the treatment plan chosen. This discussion may include clinical trials.

Depending on previous therapy, your health care team may recommend a treatment plan that includes surgery; a higher dose of imatinib, regorafenib, or sunitinib; or treatment through a clinical trial. Your doctor may continue to recommend imatinib, regorafenib, or sunitinib, even if they are not working perfectly. He or she may also recommend going back to one of these drugs (commonly imatinib) after the others have been tried, after they have stopped working. In general, some treatment with targeted therapy for GIST is better than no treatment at all. Palliative care will also be important to help relieve symptoms and side effects.

For most patients, a diagnosis of metastatic tumor is very stressful and, at times, difficult to bear. Patients and their families are encouraged to talk about the way they are feeling with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group.

Remission and the chance of recurrence

A remission is when the tumor cannot be detected in the body and there are no symptoms. This is also called having “no evidence of disease” or “NED.”

A remission may be temporary or permanent. This uncertainty causes many people to worry that the tumor will come back. While many remissions are permanent, it’s important to talk with your doctor about the possibility of the tumor returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the tumor does return. Learn more about coping with the fear of recurrence.

If the tumor does return after the original treatment, it is called a recurrent tumor. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your doctor will talk about your treatment options.

Often the treatment plan will include the treatments described above, such as surgery and targeted therapy. However, they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

People with a recurrent GIST often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with a recurrence.

If treatment fails

Recovery from a GIST is not always possible. If the growth of the tumor cannot be controlled, you may not ever recover from the disease. This condition is called terminal.

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

Patients who are expected to live less than 6 months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families.

Learn more about advanced care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials and it offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Gastrointestinal Stromal Tumor - GIST - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with a GIST. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was previously tested in clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, new approaches to existing treatments, and new methods of treatment. Patients who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating GIST. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with GIST.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor must list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment. 

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for GIST, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research and it explains areas of scientific research currently going on for this type of cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide. 

Gastrointestinal Stromal Tumor - GIST - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of tumor and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about how to best treat a GIST and provide the best care to people diagnosed with GIST. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

  • New drugs. Research continues to find new drugs for GIST, particularly new targeted therapies. Several different drugs that target proteins that help tumor cells survive have recently been or are being researched. Drugs that affect tumor blood supply are also being studied to treat GIST. Treatments working through the immune system are also of interest in GIST.

  • Post-operative treatment length. The best length of time to continue imatinib treatment after surgery is unknown. Doctors are evaluating a recently completed clinical trial to learn whether giving patients 5 years of imatinib after surgery leads to better results compared with 3 years of imatinib after surgery.

Looking for More About Latest Research?

If you would like additional information about the latest areas of research regarding GIST, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Side Effects and it offers some guidance in how to cope with the physical, emotional, and social changes that GIST and its treatment can bring. Or, use the menu on the side of your screen to choose another section to continue reading this guide. 

Gastrointestinal Stromal Tumor - GIST - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

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

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

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

Talking with your health care team about side effects

Before treatment begins, talk with your doctor about possible side effects of each type of treatment you will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. Many side effects from GIST drugs may be treated effectively, either directly, or through changing the dose of therapy.

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

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

During and after treatment, be sure to tell the health care team about the side effects you experience, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the Follow-up Care section or talking with your doctor.

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

Gastrointestinal Stromal Tumor - GIST - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

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

Care for people diagnosed with a GIST doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. A person who received treatment for a GIST is typically seen by the doctor every 3 to 6 months for up to 5 years and then once a year after that. This follow-up care is important because there is always a risk that the tumor could come back, even many years after surgery. For patients with metastatic GIST, lifelong treatment is often needed to help control tumor growth.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care. Testing recommendations depend on several factors including the type and stage of cancer originally diagnosed and the types of treatment given.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist. Others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with him or her. You should share the same information with all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

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

Gastrointestinal Stromal Tumor - GIST - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

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

What is survivorship?

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

  • Having no signs of cancer after finishing treatment.

  • The process of living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long term. The treatment is used to either reduce the risk of recurrence or to manage chronic disease.

In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every person. Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life.

Survivors may feel some stress when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and people miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action you choose.

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. GIST patient advocacy groups offer online communities for people diagnosed with GIST and their loved ones. Other options for finding support include talking with a friend or a member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make positive lifestyle changes.

People recovering from a GIST are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress.

Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical check-ups and tests (see Follow-up Care) to take care of your health. Cancer rehabilitation may also be recommended. This could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and emotional counseling.

The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

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

Looking for More Survivorship Resources?

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

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

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your cancer care team. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Gastrointestinal Stromal Tumor - GIST - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

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

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • Where is the tumor located?

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

  • Should my tumor be tested for genetic changes?

  • How aggressive is the tumor? 

  • Can you recommend a GIST specialist?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

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

  • What treatment plan do you recommend? 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?

  • Do I need to start treatment right away?

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

  • Who will coordinate my overall treatment?

  • How will this treatment affect my daily life? Will I be able to work, exercise, or 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 related to my medical care, who can help me with these concerns?

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

  • Whom should I call for questions or problems?

  • Is there anything else I should be asking?

Questions to ask about having surgery

  • What type of surgery will I have? Will anything besides the tumor be removed?

  • What is the goal of surgery? Will it remove the entire tumor?

  • How long will the operation take?

  • How long will I be in the hospital?

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

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

Questions about targeted therapy/kinase inhibitors

  • If I have surgery, should I take imatinib before surgery? What dosage? For how long? How much and how long after surgery?

  • What factors determine how effective imatinib is likely to be?

  • What are the possible side effects? How will they be treated?

  • What can be done if imatinib stops working? Can I receive sunitinib in that case?

  • What can be done if sunitinib stops working? Can I receive regorafenib in that case?

  • Can I take the generic form of the drug prescribed?

Questions to ask about having radiation therapy

  • What is the goal of this treatment?

  • How often will I receive radiation therapy?

  • What side effects can I expect during treatment?

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

  • What can be done to relieve the side effects?

  • What will I experience when I receive radiation therapy? Will it hurt or cause me discomfort?

  • What can I do to get ready for this treatment? Are there recommendations on what clothes to wear or leave behind?

Questions to ask about planning follow-up care

  • What is the risk of the tumor returning? Are there signs and symptoms I should watch for?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • What follow-up tests will I need, and how often will I need them?

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

  • Who will coordinate my follow-up care?

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

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

Gastrointestinal Stromal Tumor - GIST - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2015

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about care and treatment of a person diagnosed with a tumor. This is the final page of Cancer.Net’s Guide to Gastrointestinal Stromal Tumors. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with a tumor, both for the patient and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Gastrointestinal Stromal Tumors. Use the menu on the side of your screen to select another section to continue reading this guide.