GIST: Frequently Asked Questions
In most cases, a team of experts is assembled to treat you. These medical experts include:
- A cancer specialist (oncologist)
- A doctor specializing in treatment of the GI tract (gastroenterologist)
- A surgeon
Take an active role in your treatment and work closely with the medical team. The following activities can help you take control of your treatment:
- Asking questions
- Doing research
- Getting second or third opinions if necessary
- Finding support from others who have GIST
- Locating GIST support groups.
- Connecting with others online who have GIST
What are my treatment options?
The primary treatment of GIST is surgery to remove the tumor, if possible (85% of the time). Surgery is recommended for any tumor over 2 cm in size. The actual surgical procedure will differ depending on where the tumor is located. It may be done using laparoscopic or open surgical techniques. The surgeon will remove the tumor and a small area of tissue surrounding the tumor, taking care not to rupture the tumor, which would cause cancer cells to spill into the abdomen.
In some cases, doctors will remove a suspicious-looking tumor even before any diagnosis is made. You may not have been diagnosed with GIST until after surgery.
When surgery cannot be done to remove a GIST, or when the cancer has spread to other organs, the medication imatinib (Gleevec) may be prescribed. Gleevec targets the specific cells responsible for GIST (Kit). Imatinib will either shrink the tumor, or stop its growth in the majority of cases. If your cancer has spread, the drug will not cure the cancer, but it may improve the quality and length of life.
Imatinib (Gleevec) may also be taken for up to three years after a tumor is removed, to try to keep the cancer from returning. However, the drug may stop working with time. In these instances, the dose of imatinib may need to be increased or a different drug prescribed.
If you can’t take Gleevec or become resistant to it over time, another drug called sunitinib (Sutent) is available. The drug regorafenib (Stivarga) is used to treat patients who have tumors that cannot be surgically removed and no longer respond to Gleevec or Sutent.
Other drugs such as sorafenib (Nexavar), dasatinib (Sprycel), and nilotinib (Tasigna) are currently under study for GIST.
Research has found that chemotherapy and radiation are not effective in the treatment of GIST.
What is the prognosis for someone diagnosed with GIST?
It’s difficult to predict if GIST cancer will return. Based on tumor size and how fast it is growing, the tumor will be categorized as low, intermediate, or high risk. The location of the primary tumor also plays a role in the risk of tumor recurrence. Tumors in the stomach are less aggressive than tumors that develop elsewhere in the GI tract.