Understanding your disease
How common is GIST?
You, your care partners, and your care team may have all been surprised by a GIST (gastrointestinal stromal tumor) diagnosis. After all, it is a fairly rare condition with only 4,000-6,000 cases identified each year in the US. Only about 1% of gastrointestinal cancers are GIST. GIST can happen at any age, but is more common in people older than 50.
GIST: The basics
It's not clear exactly what causes GIST. GIST may be found in the esophagus, stomach, colon, small intestine, or rectum. No lifestyle or environmental 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. If the GIST tumor can be removed with surgery, it's known as "resectable GIST." Advanced GIST is defined as GIST that can no longer be treated with surgery alone, or has come back, or has spread to another part of the body. If GIST cannot be treated with surgery, there are other treatment options available. There are a number of tyrosine kinase inhibitors, or TKIs, a targeted medication, approved to treat GIST.
GIST may be something that you're living with for a very long time. It's important to remember that the GIST you're living with today may be different from the GIST you have later. Your treatment needs and personal needs may change, too. Because your treatment needs may change, and due to the rarity of the disease, it's important to find a GIST specialist.
What is disease progression?
Disease progression means that cancer cells may be growing, the tumor may be getting bigger, or it may be spreading.
What causes it?
Disease progression can happen if genes continue to change (mutate), which means that someone with GIST can have new and different mutations over time. If that happens, a treatment could stop working, even if it worked before. This is called drug resistance. You should always speak to your doctor about your GIST treatment. You may not be aware that your GIST treatment is no longer working, or you may develop new symptoms that signal something is wrong. Because it may be hard to tell on your own, it's important to have follow-up appointments and tests with your care team.
Not sure what to ask at your next GIST doctor's appointment?