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Gastrointestinal Stromal Tumor - GIST - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2014

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 Tumors. 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, liver, small intestine, colon, rectum, anus, and lining of the gut. The GI tract plays a central role in digesting food and liquid and in processing waste.

When food is swallowed, 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 five to six feet of the large intestine, and the rectum makes up the last six inches, ending at the anus.

About gastrointestinal stromal tumors (GISTs)

A tumor begins when normal cells change and grow uncontrollably. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can invade other tissues and spread to other parts of the body. A benign tumor means the tumor will not spread. A tumor can start in any part of the GI tract, and there are several different types of GI tumors, including gastrointestinal stromal tumors (GISTs).

GISTs are different from other 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 sarcoma. Soft tissue sarcomas develop in the tissues that support and connect the body, and the sarcoma cells resemble the cells that hold the body together, including fat cells, muscles, nerves, tendons, joints, blood vessels, or lymph vessels.

Originally, GISTs were thought to be either muscle or nerve tumors, but modern research has shown that GISTs begin in “pacemaker” cells found in the walls of the GI tract, called interstitial cells of Cajal (ICC). These cells send signals to the GI tract to help move food and liquid through the digestive system.

It is important to note that all GISTs can be cancerous. Sometimes it may be difficult for the doctor to tell immediately 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 size of the tumor, whether it has already spread, how many dividing cells there are, its genetic makeup, and the tumor’s location. 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, view this short video led by an ASCO expert in sarcoma that provides basic information and areas of research. Please note this link will take you to another section on Cancer.Net.

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Gastrointestinal Stromal Tumor - GIST - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2014

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

Each year, approximately 3,500 adults in the United States will be diagnosed with a GIST. Sixty percent (60%) of GISTs begin in the stomach, and 30% develop in the small intestine. The remaining types of GISTs mostly start in the rectum, colon, and esophagus.

Most people with a GIST, even those with disease that has spread, live for years after their diagnosis. The specific survival rate is the percentage of people who survive after the cancer is detected, excluding those who die from other diseases. The survival rate for people with a GIST depends on several factors, including specific biologic characteristics of the tumor and its risk of coming back after treatment. In addition, the pace of GIST treatment research has been relatively rapid in the past 15 years, particularly since the 2002 approval of the drug imatinib (Gleevec) that will be discussed in more detail in the Treatment Options section.

Survival statistics should be interpreted with caution. These estimates are based on data from thousands of people with this type of tumor in the United States each year, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with a GIST. Learn more about understanding statistics.

Source: American Cancer Society.

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Gastrointestinal Stromal Tumor - GIST - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2014

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 lifestyle and health care choices.

The majority of GISTs develop for no known reason, called sporadic. Doctors are rarely able to find a specific risk factor for patients diagnosed with a GIST, other than the hereditary syndromes discussed below.

Age. GISTs most often occur in people older than 50.

Gender. GISTs are slightly more common in men than in women.

Family history. GISTs rarely run in families, and having a family member with a GIST does not always increase your risk of developing the disease. Hereditary syndromes that can increase the risk of GISTs include neurofibromatosis Type 1 (NF1) and Carney-Stratakis dyad.

Genetics. Most often, a GIST, including non-hereditary tumors, develops because of genetic mutations or changes. The two most common genes affected are called KIT and platelet-derived growth factor receptor (PDGFR). Increasingly, researchers are finding other mutations, such as a protein called succinate dehydrogenase (SDH), or 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 GISTs 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 development.

To continue reading this guide, use the menu on the side of your screen to select another section.

Gastrointestinal Stromal Tumor - GIST - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2014

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 a 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
  • Nausea and vomiting
  • Vomiting blood or having blood in the stool
  • Fatigue due to anemia, which is a low red blood cell count

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 helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select 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, 12/2014

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, find out if it 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. For most types of tumors, a biopsy is the only way to make a definitive diagnosis. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the cancer has spread. This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of tumor suspected
  • Signs and symptoms
  • Previous test results

In addition to a physical examination, the following tests may be used to diagnose GISTs or determine the best treatment:

Computed tomography (CT or CAT) scan. A CT scan is the most common test used to diagnose GISTs. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size or help doctors determine whether the cancer has spread to the liver. 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 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 and is tested in the doctor's office or a laboratory.

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. This procedure is also called a barium swallow, because the x-rays are taken after a patient drinks a substance called barium, which 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. This test allows the doctor to see the inside of the stomach. The patient may be sedated, and the doctor inserts a thin, lighted tube called a gastroscope through the mouth, down the esophagus, and into the stomach and small bowel. Sedation is giving medication to become more relaxed, calm, or sleepy. If abnormal areas are found, the doctor can remove a sample of tissue and check it for evidence of cancer (see Biopsy, below). A special type of test called a capsule endoscopy involves swallowing a small camera, which allows very clear viewing of the small intestine. It is rarely used but can be useful when other diagnostic methods have failed to pinpoint 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 that 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. PET scans are often used to add to the information gathered from the CT scan, MRI, or physical examination. They may also be used to show early growth of the disease (called PET flare) or to measure how well treatment is working.

Biopsy. A biopsy may be recommended 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. Other tests can suggest that cancer is present, but only a biopsy can make a diagnosis. The type of biopsy performed will depend on the location of the tumor. The sample removed during the biopsy is analyzed by a pathologist. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. Sometimes, surgery is recommended even if the biopsy results do not indicate cancer, as a biopsy for GIST is not always definitive. In some instances, an entire tissue mass or an organ will be removed to make a diagnosis. However, it is very important that you see a team of medical and surgical oncologists experienced in the treatment of GISTs before a big surgery is performed.

Molecular testing of the tumor. Your doctor may suggest running laboratory tests on a tumor sample to identify specific genes, proteins, and other factors unique to the tumor. Studies have shown that depending on the tumor’s specific gene mutations, some patients may need higher doses of imatinib to best control the tumor or 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 also used in research studies. Treatment for a GIST can start before this type of testing is completed, but the results of this test may change the treatment plan after it has begun.

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

The next section helps explain the different stages for this type of tumor. Use the menu on the side of your screen to select Stages, or you can select 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, 12/2014

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 cancers.

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 GISTs 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 will be:

  • The size of the tumor
  • The mitotic count, which describes the actual number of dividing cells
  • The location where the tumor started

Information about the tumor’s aggressiveness will help the doctor recommend a treatment plan.  The next section helps explain the treatment options for this type of tumor. Use the menu on the side of your screen to select Treatment Options, or you can select 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, 12/2014

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 proven treatments available) for GISTs. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study to test a new approach to treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Your doctor can help you review all treatment options. For more information, see the Clinical Trials and Latest Research sections.

Treatment overview

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.

Descriptions of the most common treatment options for GISTs are listed below. Treatment options and recommendations depend on several factors, including the type and stage of tumor, possible side effects, and the patient’s preferences and 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 surrounding tissue during an operation.

For patients with a localized GIST, surgery is the standard treatment and should be performed whenever possible. A surgical oncologist is a doctor who specializes in treating cancer using surgery. Learn more about cancer surgery.

Sometimes, the tumor may be large, or it has spread into nearby organs. In many of these instances, a drug called imatinib (see Kinase inhibitors below) will be given before surgery. The surgeon will most likely still try to remove the entire tumor in an effort to reduce the risk that the tumor will recur or block the GI tract. In order 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 three years. This type of post-surgical treatment is called adjuvant therapy.

Kinase inhibitors

Kinase inhibitors are drugs that target specific proteins 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 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. As a result, doctors can 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.

In 2002, the U.S. Food and Drug Administration (FDA) approved imatinib for the treatment of GISTs. Imatinib is a kinase inhibitor, and it is often the first drug used to treat GISTs. Since this drug has become available, the prognosis for patients with a GIST has improved considerably. It is usually given alone or either before or after surgery, as described above under Surgery.

Imatinib is usually given for a long time. Research has been conducted to find out how long imatinib should be given after surgery to help delay or prevent a recurrence. 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, and minor muscle aches. Serious but relatively rare side effects include bleeding and inflammation of the liver. Some side effects from imatinib get better over time, so a decision to stop treatment because of side effects should be considered carefully. People who have serious side effects may take a reduced dose of imatinib and still benefit from it.

Sunitinib (Sutent) is a kinase inhibitor that 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. Sunitinib was approved in 2006 by the FDA for treating GISTs 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 despite taking a lower dose. Talk with your doctor about the possible side effects for a specific medication and how they can be managed.

Regorafenib (Stivarga) is a tyrosine kinase inhibitor 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.

Learn more about 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. 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 GISTs; however, it may be used as a palliative treatment to relieve pain or 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 radiation therapy.

Chemotherapy

Traditional chemotherapy is the use of drugs to destroy cancer cells by damaging the tumor’s DNA. However, standard chemotherapy is not effective for treating GISTs; therefore, it should not be used.

Getting care for symptoms and side effects

GISTs and their 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, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care can help a person at any stage of illness. 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, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the cancer, such as drug therapy, surgery, and 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 supportive 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 GISTs

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 because there can be different opinions about the best treatment plan. Learn more about seeking 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, sunitinib, or regorafenib; or treatment through a clinical trial. Your doctor may continue to recommend imatinib, sunitinib, or regorafenib, even if they are not working perfectly. In general, some treatment with targeted therapy for GIST is better than no treatment at all. Supportive 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 being “NED.”

A remission may be temporary or permanent. This uncertainty leads to many survivors feeling worried or anxious 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 the 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, including whether the tumor’s stage has changed. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the therapies described above, such as surgery and targeted therapy, but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor.

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 different types of treatment outlined above are not successful in controlling the growth of the tumor, the disease may be called terminal.

This diagnosis is stressful, and this 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 six months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced 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 helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select 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, 12/2014

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.

Doctors and scientists are always looking for better ways to treat patients with a GIST. To make scientific advances, doctors create research studies involving volunteers, called 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.

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 GISTs. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with GISTs.

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare. When a placebo is used in a study, it is done with the full knowledge of the participants, and the patients are often offered the experimental drug if the tumor grows while they are taking a placebo. Find out more about placebos in clinical trials.

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different 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.

For specific topics being studied for GISTs, learn more in the Latest Research section.

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. 

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.

The next section helps explain the areas of research going on today about this type of tumor. Use the menu on the side of your screen to select Latest Research, or you can select 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, 12/2014

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 GISTs, ways to prevent them, how to best treat them, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

New drugs. Research continues to find new drugs for GISTs, particularly new targeted therapies. Several different drugs that target proteins that help tumor cells survive have recently been or are being researched, such as ponatinib (Iclusig), a drug that is already approved by the FDA to treat specific types of leukemia. Drugs that affect tumor blood supply are also being studied to treat GISTs.

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current treatments for GIST in order to improve patients’ comfort and quality of life.

Looking for More About Latest Research?

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

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select 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, 12/2014

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

Common side effects from each treatment option for GISTs 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.

Before treatment begins, talk with your doctor about possible side effects of each type of treatment you will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving you may need during treatment and recovery, as family members and friends often play an important role in the care of a person with 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 After Treatment section or talking with your doctor.

The next section helps explain medical tests and check-ups needed after finishing treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.

Gastrointestinal Stromal Tumor - GIST - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 12/2014

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

Talk with your doctor about developing a follow-up care plan after your initial treatment for a GIST. This plan will include regular physical examinations and medical tests to monitor your recovery over the coming months and years. ASCO offers treatment summary forms to help keep track of the treatment you received and develop a survivorship care plan once treatment is completed.

A person who received treatment for a GIST is typically seen by the doctor every three to six months for up to five 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 after extensive surgery. For people with metastatic GIST, lifelong treatment is often needed to help control tumor growth.

People recovering from a GIST are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, not smoking, eating a balanced diet, and having recommended cancer screening tests. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help rebuild your strength and energy level. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about the next steps to take in survivorship, including making positive lifestyle changes.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select 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, 12/2014

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.

General questions

  • 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?
  • Should I see a GIST specialist?
  • 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 is the goal of each treatment? Is it to eliminate the tumor, help me feel better, or both?
  • What treatment plan do you recommend? Why?
  • 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 be coordinating my overall treatment and follow-up care?
  • What are the possible side effects of this treatment, both in the short term and the long term?
  • 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?
  • Whom should I call for questions or problems?

Questions to ask before surgery

  • Can you describe this surgery to me?
  • Why are you recommending this specific type of surgery for me?
  • What is the goal of surgery? Will it remove all of the tumor?
  • Will I need to stay in the hospital for this surgery? For how long?
  • What are the possible side effects of this surgery? How will they be prevent and/or managed?

Questions about targeted therapy/kinase inhibitors

  • If I have surgery, should I take imatinib before surgery? What dosage? For how long?
  • If I have surgery, should I take imatinib after surgery? What dosage? For how long?
  • 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 before radiation therapy

  • What type of radiation therapy do you recommend? Why?
  • What is the goal of radiation therapy?
  • How often will I receive radiation therapy?
  • How much time will each treatment take?
  • 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?
  • What possible side effects can I expect from this treatment? How will they be prevented and/or managed?

After treatment, including surgery

  • What are the chances that the tumor will come back after treatment?
  • What follow-up tests do I need, and how often do I need them?
  • What support services are available to me? To my family?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select 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, 12/2014

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. Here are a few sections that may get you started in exploring the rest 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.