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.
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 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 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 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.
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.
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.