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    GIST: Frequently Asked Questions


    The chart below shows how letters and numbers are used to identify your cancer stage. This information helps guide your treatment and prognosis.

    Letter What it refers to
    T Size of the tumor (1 - 4)
    N Indicates whether it has spread to nearby lymph nodes (rare for GIST) most GISTS will be “N0” (zero).
    M Indicates whether the cancer has spread to nearby organs. (0 or 1)
    Mitotic rate How fast the cancer is growing (low or high)

    Do I need to see a specialist?
    Because GIST is rare and can be unpredictable, choosing the correct doctor is an important decision. There are a limited number of doctors and medical centers experienced in treating GIST. Talk to your doctor about finding a doctor who is skilled in GIST treatment.

    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.

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