Gastrointestinal Stromal Tumor (GIST)

Gastrointestinal stromal tumors (GISTs) are rare cancerous tumors in your digestive system. They may not cause symptoms. But when they do, symptoms may include belly pain, blood in your poop and vomiting blood. Surgery to remove a GIST is the most common treatment. In some cases, surgery cures the condition. But these tumors can come back.


Anatomy of gastrointestinal stromal tumors (GISTS) in the walls the gastrointestinal tract
GISTS are cancerous tumors in your GI tract in your digestive system. Symptoms include belly pain and blood in your poop.

What are gastrointestinal stromal tumors (GISTs)?

GISTs are cancerous tumors that develop in the walls of your gastrointestinal tract in your digestive system. They’re a type of soft tissue sarcoma. Some gastrointestinal stromal tumors are small, about the size of a pencil eraser, and you might not notice them. But they can also grow large enough to cause symptoms and medical issues. Healthcare providers treat GISTs with surgery to remove the tumors.

How common are gastrointestinal stromal tumors?

They’re rare. Experts estimate that every year, between 4,000 and 6,000 people in the U.S. receive a GIST diagnosis.


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Symptoms and Causes

What are the symptoms of a GIST?

Gastrointestinal stromal tumors may not cause symptoms, especially if the tumors are small. Often, people learn they have a GIST when they have a test or surgery for another reason. When symptoms develop, they may include:

What causes gastrointestinal stromal tumors?

This condition usually happens when the KIT gene mutates (changes) and causes cells in your digestive tract to multiply uncontrollably. This mutation happens during your lifetime and isn’t something that you inherit.

The KIT gene tells cells to make a protein (KIT CD117) that makes cells in your digestive tract multiply. In GIST, the abnormal cells multiply and develop into tumors.

You can also develop GIST if you inherit certain tumor disorders, including:

  • Familial GIST syndrome: Rarely, abnormal KIT genes may be passed on from parent to child. This can increase your chances of developing GISTs. If you have familial GIST syndrome, you may develop GIST at a young age. And you may have more than one tumor.
  • Neurofibromatosis type 1: This disorder causes certain cells to grow and multiply, creating tumors that can form all over your body.
  • Carney-Stratakis syndrome: People with this rare, inherited condition are at higher risk of developing GISTs.


Diagnosis and Tests

How are GISTs diagnosed?

A healthcare provider will ask you about your symptoms and how long you’ve had them. They’ll do a physical examination. They may also do the following tests:

Management and Treatment

How are gastrointestinal stromal tumors treated?

Oncologists typically treat GISTs with surgery. But treatment depends on what providers learn about the tumor from test results, including tumor size, location and whether the tumor is spreading from where it started (metastasis).

For example, your oncology surgeon may be able to remove small tumors, and surgery may be the only treatment you’ll need. If a tumor is very large, your oncologist may order targeted therapy to shrink the tumor before surgery.

Side effects of GIST treatment

Targeted therapy may cause the following side effects:

Common GIST surgery side effects are:


Outlook / Prognosis

What can I expect if I have a GIST?

Your oncologist will monitor your recovery and overall health even after you finish treatment. You may have follow-up appointments every three to six months. Your oncologist may order the following tests:

What’s the survival rate for someone with GIST?

Survival rates vary depending on tumor size and activity at the time of diagnosis, your overall health and the tumor’s response to treatment. Overall, data from the U.S. National Cancer Institute (NCI) show that 85% of people with GIST were alive five years after diagnosis. Other survival rates are:

Tumor location
Local — the tumor didn’t spread from where it started.
Five-year survival rate
Regional — the tumor spread to nearby tissues and organs.
Five-year survival rate
Distant — the tumor is in more distant areas of your body.
Five-year survival rate

As you think about survival rates, try to keep these factors in mind:

  • These are estimates: They’re based on the experiences of other people, and your situation may be very different. For example, your overall health and age may affect your estimated survival rate.
  • The numbers reflect the past: Survival rates reflect the recent past, not the present. Experts measure survival rates every five years, so current rate information doesn’t account for the impact of any new treatments.
  • Survival rates and life expectancy are different: Survival rates don’t estimate how long you’ll live. Life expectancy data reflects the experiences of people who are just like you. Life expectancy data for people with GIST isn’t available.

If you have questions about what to expect, ask your oncologist to explain survival rates and what the data mean for you.

Living With

How do I take care of myself?

Protecting your overall health during and after treatment is the best way you can take care of yourself:

  • Eat well. Choose a wide variety of high-protein, low-fat foods and try to add leafy greens and fruits to your daily meals.
  • Get some exercise. Being sick can be stressful. As you recover from treatment, regular light exercise can help you manage stress. Talk to your healthcare provider before you go back to your exercise routine or start a new one.
  • Avoid tobacco. Using tobacco of any kind, including electronic cigarettes, increases your risk of developing new cancer or that a GIST will come back.

A note from Cleveland Clinic

Gastrointestinal stromal tumors (GISTs) may not cause noticeable symptoms. But when they do, you might blame your upset stomach on a recent meal or maybe the stomach flu. It may come as a shock to learn a rare cancerous tumor is why you don’t feel well. If you have this condition, take some time to learn about this rare disease, including your treatment options. Treatment can often ease your symptoms and cure GIST. You’ll have questions, and your healthcare team will be there with answers, support and more.

Medically Reviewed

Last reviewed on 04/15/2024.

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