Gastrointestinal Stromal Tumors (GIST)

Most patients with GIST do not have any specific symptoms.

Gastrointestinal stromal tumor symptoms are common to a variety of different problems. Check with your doctor if you experience any of the following:

• Blood in your vomit or stool
• Severe stomach pain
• Painful swallowing
• Your stomach feels full even after eating just a small amount of food
• Fatigue
  
   

Gastrointestinal stromal tumors can be hereditary.

We don't always know why people develop this kind of tumor. However, in some cases, risk factors can increase your chances of developing this disease. The primary risk factor is genetics, meaning that the cancer can be passed down in families. Certain genetic syndromes may also be risk factors, including:

• Neurofibromatosis type 1, a rare condition that affects the skin, bones, and nervous system
• Carney triad, a condition involving three rare GI tumors, including GIST, pulmonary chondromas, and paragangliomas

If you have a personal or family history of either of these, you may benefit from genetic counseling. Our board-certified genetic counselors can provide education, support, and recommendations for lowering your risk of disease if you have an inherited gene alteration.

There are no routine tests for detecting GIST early.

Many other types of cancer can be detected early with screening tests. For example, colon cancer can be preventable through regular colonoscopy screenings. However, because these tumors are rare, there isn't an effective way to screen for them if you don't have symptoms. And because the only risk factors associated are inherited syndromes, you can't prevent this type of cancer.

If you do have symptoms, it's important to talk to your doctor immediately so they can figure out the cause. There are always more treatment options when a tumor is found early.

If you have signs of this disease, our experts will use several tests to look for a tumor.

Because there is no way to screen for this type of cancer, most patients find out they have it while undergoing other exams—or even surgery for an unrelated issue. Other times, patients come to their doctor with symptoms and need further testing to understand what's causing them. Your primary care doctor may refer you to a specialist in treating GI disorders, called a gastroenterologist.

To determine if you have a this type of tumor, your doctor perform several diagnostic tests, including:

• Medical history: We will review your symptoms and discuss your medical history, including illness and previous surgeries. We will also discuss whether anyone else in your family suffered from GIST.
• Physical examination: We will examine you carefully for signs of this kind of tumor.
• Imaging tests: We may use one or several types of imaging to view your GI organs and tissues, including a CT scan,> MRI, Positron emission tomography (PET) scan, or Chest X-ray.
• Upper endoscopy: We will place a thin, lighted tube (endoscope) through the mouth and esophagus to examine the organs of the upper GI tract (esophagus, stomach, and small intestine).
• Lower endoscopy (Colonoscopy): We will insert a colonoscope through the anus to view the rectum and entire colon.
• Endoscopic ultrasound and biopsy: this procedure, your surgeon creates an image of your GI tract and removes tissues for a biopsy. A biopsy is a close examination of your tissue under a microscope that determines whether the tissue is cancerous.

If these tests indicate cancer, your gastroenterologist will refer you to a surgical oncologist. They may perform or refer you for additional tests to confirm your diagnosis and/or learn whether your cancer is spreading to other parts of your body. For example, a pathologist may use additional tests to study the cells, such as:

• Immunohistochemistry, a test that checks for certain antigens
• Mitotic rate, to measure how quickly the cancer cells are growing

Understanding your GIST diagnosis

Your surgical oncologist will discuss your results with you thoroughly, explaining everything to you so that you confidently understand your diagnosis. In particular, it’s important that you know about:

• Tumor size
• Mitotic count, or the number of abnormal cells visible under a microscope
• Tumor location
• Whether you have a certain molecule that indicates a GIST tumor (c-KIT positivity)
• Tumor stage
• Whether you need targeted therapy before or after surgery
• What clinical trials are available
• What your chances of recurrence after surgery are
  
   

Armed with this information, your team of surgical oncologists will work with a team of other specialists to determine the most effective treatment options for your disease.

There are several rare subtypes of GIST.

These sarcomas can be further categorized by the following:

• Wild-type GIST: These tumors develop spontaneously and aren't caused by cell mutations
• Pediatric GIST: This type of tumor affects children and young adults
• Syndromic GIST: This type is linked to Carney's Triad Syndrome
• Familial GIST: These tumors are related to KIT gene alterations passed down from parent to child

Your individualized treatment plan involves input from some of the most experienced doctors who treat GIST. A multi-specialty team of experts will review your case and determine the best approach for treating your tumor. You'll benefit from the expertise of surgeons who have extensive experience performing complex and challenging surgeries on these tumors that affect critical organs and other tissues. Many times our surgeons can even remove tumors that were considered unresectable at other institutions. Your surgeons will also collaborate with other specialists, including experts in gastroenterology, pathology, and radiology, as well as medical and radiation oncology. This ensures we consider all of your options, including those unavailable elsewhere.

You'll benefit from state-of-the-art, personalized therapies as soon as they're available. Our cancer specialists are pioneers in treating GIST with novel therapies, including targeted therapies. For example, we participated in early trials testing imatinib, a biologic drug that is now used as the standard of care for treatment. Through The Ruesch Center for the Cure of Gastrointestinal Cancers, our doctors are leading new investigations for drugs that use information about your cancer's DNA to deliver effective treatment. As a patient at MedStar Health, we may recommend an emerging clinical trial that may improve your quality of life or oncologic outcome.

We offer comprehensive support, education, and resources for you and your loved ones. We're invested in helping you maintain or improve your quality of life during and after treatment. And because your diagnosis affects your family, we're here for them, too. From financial, transportation, and lodging assistance to spiritual guidance, peer mentoring, and counseling, we offer all the supportive care you need to navigate your cancer journey.

If you have cancer, knowing all of your options and having access to the right resources can make all the difference. Whether you are undergoing treatment or recovering, we offer comprehensive services to help you through.

Learn More About Cancer Support Services

Genetic counseling

Genetic counseling and testing can be helpful for patients who have familial GIST. These types of tumors are caused by inherited gene alterations, which means you could pass them along to the next generation. Our board-certified genetic counselors can help you understand you or your family's predisposition to this type of cancer and your options for managing your risk.

Learn More About Genetic Counseling

Personalized rehabilitation

Cancer rehabilitation may involve several types of therapy to help you regain strength, independence, and health during and after treatment. Your personalized rehabilitation plan may involve specialists in physical therapy, occupational therapy, nutrition, speech-language pathology, and others.

Learn More About Cancer Rehabilitation

Survivorship

Cancer can affect every aspect of your life, even after you've finished treatment. We provide a wide range of programs and services to help you and your loved ones transition to life beyond cancer, from counseling and stress management to addressing treatment side effects and improving your quality of life. We also guide you through frequent follow-up care to monitor any signs of recurrence.

Learn More About the Cancer Survivorship Program