If you or a loved one has been diagnosed with a gastrointestinal stromal tumor (GIST), you may have a lot of questions. These tumors can be cancerous (malignant) or noncancerous (benign). If cancerous, this type of tumor is a sarcoma. Experts at the OSUCCC – James specialize in treating sarcomas. Our board-certified specialists and subspecialists treat rare cancers like GIST's using the latest approaches.
What’s GIST?
GISTs occur in the nerve cells within the digestive system or gastrointestinal (GI) tract. These tumors are incredibly rare and account for less than 1% of all cancer diagnoses. When they do occur, they can form anywhere along the GI tract. However, more than half of all diagnoses occur in the stomach and small intestine. While most GISTs are not cancerous, nearly one-third of GIST diagnoses are cancerous (malignant). This cancer mostly affects adults over 50 and is rarely seen in children.
If a gastrointestinal stromal tumor is cancerous, it’s considered to be a type of soft tissue sarcoma; these tumors form in the nerve tissues of the GI tract. Soft tissue sarcomas can occur in the muscles, fat cells, blood vessels, nerves and tendons of the body. There are more than 80 types of sarcomas and gastrointestinal stromal tumors are one of them.
GIST causes and symptoms
Cancerous gastrointestinal stromal tumors may have symptoms like other illnesses. It’s important to talk to your doctor if you have any symptoms.
GIST symptoms may include:
- Stomach pain or cramping
- Nausea or vomiting
- Feeling full after only eating a small amount
- Loss of appetite
- Fatigue
- Unexplained weight loss
Just because you may have one or more of these symptoms doesn’t mean you have a tumor.
According to the latest research, it’s thought that gastrointestinal stromal tumors develop due to abnormal changes in your body’s cells. Those cells grow out of control and cause tumors. However, some research has shown that certain genetic mutations passed down from parent to child may also cause these tumors.
GIST risk factors
There are some risk factors associated with GIST. A risk factor is anything that could increase the likelihood that you may develop a disease. Some risk factors you can influence and others you can’t.
Some risk factors for GIST may include:
- Age: Adults over 50 are more likely to develop these tumors.
- Sex: GIST tends to be found more in males assigned at birth.
- Genetics: Some inherited genetic syndromes may play a role in the development of some GISTs, such as neurofibromatosis type 1/von Recklinghausen's disease and Carney-Stratakis syndrome.
It’s important to remember that just because you may have a risk factor doesn’t mean you’ll get the disease. Therefore, it’s important to talk to your doctor if you have any unusual symptoms.
GIST diagnosis
If your doctor suspects you may have a GIST, they may order a series of tests to confirm this. These tests can include imaging or biopsies, where an OSUCCC – James pathologist will review the cells from the biopsy to determine the tumor type.
Some imaging tests and procedures that may be ordered include:
- Computed tomography (CT) scan
- Magnetic resonance imaging (MRI) scan
- Endoscopy
- Colonoscopy
During an endoscopy or colonoscopy procedure, your doctor might take biopsies to test any suspicious tissue samples. Along with the tissue samples, your doctor will review any imaging reports and determine a diagnosis based on those reports.
GIST treatment
If your doctor determines that you have a gastrointestinal stromal tumor, they may recommend one or more treatments. Experts at the OSUCCC – James are paving the way with cutting-edge research and developing novel sarcoma treatments. The OSUCCC – James is home to one of the only dedicated sarcoma clinics in the country.
Treatments may include:
Surgery
If the GIST hasn’t spread, often it can be removed with surgery. Surgery often involves removing as much of the tumor as possible, if not all, and some surrounding tissue. Specific surgery type will be determined based on the location and size of the tumor.
Tyrosine kinase inhibitor (TKI) therapy
These drugs target specific proteins within the tumor to help stop or slow down the tumor’s growth. Over time, a GIST can shrink with the help of these medications and make surgical removal of the tumor possible in some situations.
Radiation therapy
For some gastrointestinal stromal tumors, radiation therapy may help reduce its size. Radiation therapy uses high-energy X-rays near the GIST.
Chemotherapy
Sometimes chemotherapy may be recommended in specific situations to treat a GIST, but other treatments tend to be more effective. Chemotherapy is only used in certain situations.
Experts at the OSUCCC – James will help determine the right treatment for your individual needs.
If you’ve been diagnosed with a GIST, would like a second opinion or would like to speak with a gastrointestinal oncology specialist, please call The James Line at 800-293-5066 or 614-293-5066 to make an appointment.
Additional Resources
Types of Sarcoma
Soft Tissue Sarcoma
Screening and Diagnosis
Clinical Trials