ON THIS PAGE: You will learn about the different treatments doctors use for people with this type of tumor. Use the menu to see other pages.
This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn whether the new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.
In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. Cancer care teams include a variety of other health care professionals, such as physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.
Descriptions of the most common treatment options for GIST are listed below. Treatment options and recommendations depend on several factors, including the type and stage of tumor, possible side effects, the patient’s preferences, and the patient’s overall health. The doctor will look at many factors to determine the best treatment, including the tumor’s:
Number of dividing cells
Whether it has already spread
Whether the tumor ruptured, either on its own or as a result of surgery
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. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. Learn more about making treatment decisions.
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.
Before surgery, talk with your health care team about the possible side effects from the specific surgery you will have. Learn more about the basics of cancer surgery.
If the tumor is large or has spread to nearby organs, you may first receive imatinib (see Tyrosine kinase inhibitors, below). The purpose of this approach is to shrink the tumor to make it easier to remove with surgery. 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.
GIST has the ability to come back after being surgically removed and can spread to other organs. Some GISTs have a higher risk of returning or spreading than others. After surgery, patients who may have a high risk of recurrence often receive imatinib for at least 3 years. This type of treatment after surgery is called adjuvant therapy.
Tyrosine kinase inhibitors (TKIs)
TKIs are drugs that target specific proteins called kinases 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. Because some of these genetic changes in the tumor may mean the drugs described below may not work well, 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. The drugs described in this section are listed in alphabetical order, not in the order that they are used in treatment.
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 a lot. It is usually given before or after surgery, as described under Surgery, above.
Imatinib is usually given for a long time, sometimes indefinitely. Research is being evaluated 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.
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 lower dose of imatinib and still benefit from it. If you want to stop treatment because of the side effects, talk with your health care team to learn whether this is the best option.
Sunitinib is a TKI that works in many different ways to slow tumor growth. Sunitinib also blocks both KIT and the process of making new blood vessels, which is called angiogenesis. 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.
Regorafenib (Stivarga) is a TKI that works in many different ways to slow tumor growth, including blockade of the KIT molecule and blocking blood vessel growth into tumors. 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 fatigue, nausea, hand-foot syndrome, high blood pressure, diarrhea, and inflammation of the liver.
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 GIST 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. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy.
A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.
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 is the use of drugs to destroy cancer cells, usually by ending 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 intended 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 tumor, may receive palliative care. It works best when palliative care is started as early as needed in the treatment process. People often receive treatment for the tumor at the same time that they receive treatment to ease side effects. In fact, patients who receive both at the same time 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 tumor, 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. 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 part in the body from where it started, doctors call it metastatic. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Also, clinical trials might be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.
Depending on previous therapy, your treatment plan may include surgery, a higher dose of a TKI, 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 1 of these drugs (usually imatinib) after the others have been tried and/or 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 new cycle of testing will begin again to learn as much as possible about the recurrence. After this 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 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 or metastatic 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 doesn’t work
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 for many people, advanced cancer is difficult to discuss. 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 talk with the health care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families.
Learn more about advanced 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. It offers more information about research studies that are focused on finding better ways to care for people with a GIST. You may use the menu to choose a different section to read in this guide.