Gastrointestinal stromal tumors (GIST) are a rare type of cancer. They form in the digestive system, usually, but not always, in the stomach or intestines. If you or a loved one has been diagnosed with GIST, you may have questions about the condition, GIST treatment and what to expect.
At Banner MD Anderson Cancer Center, we provide expert care and support for people with GIST. Our team works with you to create a treatment plan and is alongside you for every step of your journey toward recovery.
GISTs are different from other types of stomach cancers (such as adenocarcinoma) and from colon cancers because GISTs start in muscle layers. Most stomach and colon cancers start in glandular cells that produce mucus.
GISTs happen when cells in the wall of the digestive system grow out of control. GISTs usually occur in the cells that are part of the nerves that help your muscles contract. These cells are called the interstitial cells of Cajal.
Most GISTs are caused when certain genes (usually the KIT and PDGFRA genes) that control cell growth mutate and cause cancer cells to grow uncontrollably. It’s not clear what causes these mutations, but these GIST risk factors may make it more likely for you to develop the condition:
You can develop GIST even if you don’t have these risk factors.
Many GISTs grow slowly, so you may not notice symptoms until the tumor is larger or more advanced. Common symptoms include:
If you notice any of these symptoms, it’s important to contact a health care professional. Treatments have a higher chance of working better when GIST is detected early.
At Banner MD Anderson, we use a range of advanced diagnostic tools to identify GISTs. Your health care provider will work closely with you to make sure you have the right tests and develop the best plan for your care, if needed. They may recommend:
There are treatments for GIST that work well. Treatment depends on the tumor’s location, its size and its genes. Common treatment options include:
GIST surgery is the first treatment step for many people. The goal is to completely remove the tumor.
Surgeons may be able to remove small tumors with minimally invasive procedures like laparoscopy or robotic techniques. About 70% of people with GIST have small tumors and they are usually cured after the tumors are removed.
However, depending on how big the tumor is and where it’s located, surgeons may need to remove part of the stomach or intestines.
If the tumor has a high risk of recurring, your provider will probably recommend a three-year course of imatinib (Gleevec) after surgery to decrease the risk of it coming back. Smaller tumors found in the stomach that are growing slowly have a lower risk of recurring. Larger tumors in the small intestine that are growing quickly have a higher risk of recurring.
Imatinib targets a mutation in a gene that is responsible for more than 90% of these tumors. It is a medication you take by mouth and most people tolerate it well.
Larger tumors may involve other organs and be difficult to remove. Treating them with imatinib before surgery can shrink the tumors and make it safer and easier to remove them.
Chemotherapy and radiation aren’t always effective in GIST but they may be used to make the tumor smaller or manage symptoms, especially when surgery isn’t an option.
You may be able to try new, experimental treatments. At Banner MD Anderson, we offer clinical trials that may give you access to cutting-edge cancer care.
You may feel overwhelmed if you’re diagnosed with GIST, but it’s important to know that many people go on to lead fulfilling lives. Here are a few things to expect during and after treatment:
If you or a loved one has been diagnosed with GIST, don’t wait to get the care you need. At Banner MD Anderson, our team of surgeons, oncologists and geneticists are leaders in GIST care. They will help you understand your diagnosis, explore treatment options and provide the support you need through treatment and recovery.
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