Diseases & Conditions


A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Gastrointestinal Stromal Tumors


Synonyms of Gastrointestinal Stromal Tumors
  • GIST
  • GIST

Disorder Subdivisions



    General Discussion
    Gastrointestinal stromal tumors (GIST) belong to a group of cancers known as soft tissue sarcomas. The number of new cases in the United States annually has been estimated to be 5,000-6,000. Tumors usually arise from the intestinal tract with the most common site being the stomach, followed by the small intestine, and the colon/rectum with rare cases arising in the esophagus. There are also tumors that appear to arise in the membranous tissue lining the wall of the stomach (peritoneum) or in a fold of such membranous tissue (the omentum). There are also case reports of tumors arising in the appendix and/or pancreas. These tumors most commonly present with abdominal pain, bleeding or signs of intestinal obstruction. They spread most commonly to sites within the abdominal cavity and to the liver, although there are rare cases of spread to the lungs and bone. GIST results from a change in one of two genes, KIT or PDGFR, which leads to continued growth and division of tumor cells. There are a few reported cases of families in which a gene mutation is inherited; however, the majority of tumors are sporadic and not inherited.

    Treatment is with surgery. Patients who have disease that has spread are treated with surgery when possible and with imatinib mesylate (Gleevec, Glivec), a tyrosine kinase inhibitor that inhibits the KIT or PDGFR responsible for tumor growth. Ongoing studies are testing to see if imatinib mesylate can delay or prevent recurrence of GIST after the tumor has been removed (resection). Standard chemotherapy is not effective for this type of sarcoma, with a less than 5% response rate. The role of imatinib mesylate in pediatric GIST is being studied at this time.

    Organizations related to Gastrointestinal Stromal Tumors
    • American Cancer Society, Inc.
      1599 Clifton Road NE
      Atlanta GA 30329
      Phone #: 404-320-3333
      800 #: 800-227-2345
      e-mail: N/A
      Home page: http://www.cancer.org
    • BeatSarcoma
      143 28th Street
      San Francisco CA 94131
      Phone #: 415-651-4473
      800 #: N/A
      e-mail: info@beatsarcoma.org
      Home page: N/A
    • Cancer.Net
      American Society of Clinical Oncology
      Alexandria VA 22314
      Phone #: 571-483-1780
      800 #: 888-651-3038
      e-mail: contactus@cancer.net
      Home page: http://www.cancer.net/patient
    • Friends of Cancer Research
      2231 Crystal Drive
      Arlington VA 22202
      Phone #: 703-302-1503
      800 #: N/A
      e-mail: info@focr.org
      Home page: http://www.focr.org
    • GIST Cancer Research Fund
      55 Saw Mill Road
      New City NY 10956
      Phone #: 845-634-6060
      800 #: N/A
      e-mail: tania5kids@aol.com
      Home page: http://www.gistinfo.org
    • GIST Support International
      12 Bomaca Drive
      Doylestown PA 18901
      Phone #: 215-340-9374
      800 #: N/A
      e-mail: gsi@gistsupport.org
      Home page: http://www.gistsupport.org
    • Lance Armstrong Foundation
      PO Box 161550
      Austin TX 78716-1150
      Phone #: 512-236-8820
      800 #: 866-235-7205
      e-mail: N/A
      Home page: http://www.livestrong.org
    • Life Raft Group
      40 Galesi Drive
      Wayne NJ 07470
      Phone #: 972-837-9092
      800 #: --
      e-mail: LifeRaft@liferaftgroup.org
      Home page: http://www.LifeRaftGroup.org
    • National Cancer Institute
      6116 Executive Blvd, MSC 8322, Room 3036A
      Bethesda MD 20892-8322
      Phone #: 301-435-3848
      800 #: 800-422-6237
      e-mail: N/A
      Home page: http://www.cancer.gov
    • National Coalition for Cancer Survivorship
      1010 Wayne Avenue
      Silver Spring MD 20910-5600
      Phone #: 301-650-9127
      800 #: 877-622-7937
      e-mail: infor@canceradvocacy.org
      Home page: http://
    • OncoLink: The University of Pennsylvania Cancer Center Resource
      3400 Spruce Street
      Philadelphia PA 19104-4283
      Phone #: 215-349-5445
      800 #: --
      e-mail: editors@oncolink.upenn.edu
      Home page: http://www.oncolink.upenn.edu
    • Rare Cancer Alliance
      1649 North Pacana Way
      Green Valley AZ 85614
      Phone #: 520-625-5495
      800 #: --
      e-mail: sharon.lane@rare-cancer.org
      Home page: http://www.rare-cancer.org
    • Sarcoma Alliance
      775 E. Blithedale #334
      Mill Valley CA 94941
      Phone #: 415-381-7236
      800 #: --
      e-mail: info@sarcomaalliance.org
      Home page: http://www.sarcomaalliance.org
    • Sarcoma Foundation of America
      9884 Main Street
      Damascus MD 20872
      Phone #: 301-253-8687
      800 #: --
      e-mail: info@curesarcoma.org
      Home page: http://www.curesarcoma.org
    • Wellness Community
      919 18th Street N.W.
      Washington DC 20006
      Phone #: 202-659-9709
      800 #: 888-793-9355
      e-mail: help@thewellnesscommunity.org
      Home page: http://www.thewellnesscommunity.org



    For a Complete Report

    This is an abstract of a report from the National Organization for Rare Disorders, Inc. ? (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html