Living with GIST

Awareness
Starts with YOU

Learn about gastrointestinal stromal tumor (GIST): get informed and use the resources of livingwithgist.eu,
because GIST patients don’t have to face this journey alone.

Understanding GIST

GIST stands for Gastrointestinal Stromal Tumor. It’s a soft tissue sarcoma that can occur anywhere in the digestive tract (GISTs primarily develop in the stomach, accounting for approximately 60% of cases. About 35% occur in the small intestine. Less commonly, GISTs may also originate in the rectum, colon, or esophagus). Very rarely, a GIST can happen in the abdominal cavity—this is called an eGIST.

Gastrointestinal Stromal Tumors (GIST) are quite rare, with an estimated incidence of 10 to 15 cases per million people annually. This translates to approximately 4,500 to 6,700 new cases each year within the European Union. While GIST can occur at any age, it is most commonly diagnosed in individuals in their mid-60s.

It’s not clear exactly what causes GIST. No lifestyle or environmental risk factors have been identified, though most people with GIST do have a gene mutation, which may drive tumor development. Why that mutation happens to some people has not been determined.

Taking care of your body and mind is important

You might be very familiar with the physical impact of the disease and its treatment. The emotional burdens people sometimes have to deal with may be harder to recognize, though.

Your treatment journey

Learn more about the treatment landscape and management of GIST.

Managing symptoms

Managing side effects

Treatment adherence

Here, you can find the
support you may need

Find your safe space where you can access practical resources and our community to empower you throughout your journey.

Find the right

support
for your path

Discover all available resources:

  • List of Sarcoma Centers near You
  • List of Patient Associations in your country