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This section outlines treatments that are the standard of care (the best proven treatments available) for GIST. 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 treatment to evaluate whether it is safe, effective, and possibly better than standard treatment. Your doctor can help you review all treatment options.
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 GIST 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.
Surgery is the removal of the tumor and surrounding tissue during an operation.
For patients with 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.
Sometimes, the tumor may be large, or it has spread into nearby organs. In many of these instances, a drug called imatinib (see 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 (come back after treatment) 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 location of the tumor. The removal of lymph nodes is not generally needed because GIST does not often spread to the lymph nodes. After surgery, patients who may have a high risk of recurrence often receive imatinib for at least three years. This is a type of treatment called adjuvant therapy.
Targeted therapy is a treatment that targets the tumor’s specific genes, proteins, or the tissue environment that contributes to the tumor’s growth and survival. This type of treatment blocks the growth and spread of tumor cells while limiting damage to normal cells.
Recent studies show that not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. 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 GIST. Imatinib is a tyrosine kinase inhibitor, and it is often the first drug used to treat GIST. Since this drug has become available, the prognosis for patients with GIST has improved considerably. It is usually given alone or in combination with surgery (either before or after surgery) and is given for a long time. For patients with GIST that has spread to other parts of the body, imatinib is taken for the rest of the patient’s life to help control the tumor. Research is also planned to find out how long imatinib should be given after surgery, to help delay or prevent a recurrence.
The usual dose of imatinib is 400 milligrams (mg) daily. For some patients, the dose may be raised to 800 mg daily, especially for patients who have an exon 9 genetic mutation (change in a part of 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.
Sunitinib (Sutent) is a tyrosine kinase inhibitor called an anti-angiogenic that is focused on stopping angiogenesis, which is the process of making new blood vessels. Because a tumor needs the nutrients delivered by 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 GIST when the tumor continues to grow even after treatment with imatinib. Sutent may also be used when the side effects from imatinib are extreme. Talk with your doctor about the possible side effects for a specific medication and how they can be managed.
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.
Radiation therapy is the use of high-energy x-rays or other particles to kill 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 GIST, as it is unclear whether it helps to shrink the tumor. However, it may be used as a palliative treatment (see below) 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.
Chemotherapy is the use of drugs to kill cancer cells. However, standard chemotherapy is not effective in treating GIST; therefore, it should not be used.
A tumor 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, and it includes supporting the atient 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.
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.
A remission is when the tumor cannot be detected in the body and there are no symptoms. This may also be called “no evidence of disease” or NED.
A remission can 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.
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 therapies described above (such as surgery and targeted therapy) but 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 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.
If the tumor has spread to another location in the body, it is called a metastatic tumor. Patients with this diagnosis 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.
Depending on previous therapy, your health care team may recommend a treatment plan that includes surgery, a higher dose of imatinib, sunitinib, or treatment through a clinical trial. Regorafenib (Stivarga) is a targeted therapy recently shown to keep GIST from getting worse for some time when imatinib and/or sunitinib no longer work. Supportive care will also be important to help relieve symptoms and side effects.
For many patients, a diagnosis of metastatic tumor can be 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.
Coping with Side Effects
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 GIST are described in detail within the Treatment section. 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 GIST.
In addition to physical side effects, there may be psychosocial (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.
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.
Talk with your doctor about developing a follow-up care plan after your initial treatment for GIST. This plan will include regular physical examinations and medical tests to monitor your recovery over the coming months and years.
A person who received treatment for GIST is typically seen by the doctor every three to six months for up to five years and then annually 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 patients with metastatic GIST, lifelong treatment is often needed to help control tumor growth.
People recovering from 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.
Doctors are working to learn more about GIST, ways to prevent it, how to best treat it, 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. Several different drugs that target proteins that help tumor cells survive have recently been or are being researched, including masitinib, dasatinib (Sprycel), and HSP90 inhibitors.
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.