GIST(Gastrointestinal Stromal Tumor)RESOURCE GUIDEA collection of websites that provide information and supportfor patients with a gastrointestinal stromal tumor and thehealthcare professionals who guide them.This Resource Guide was sponsored by Novartis Pharmaceuticals Corporation.
For Any Subepithelial Mass Lesion—Is GIST Part of Your Differential Diagnosis?Do you know which one is a gastrointestinal stromal tumor (GIST)?1 23 4Used with permission, Humphris JL et al. Subepithelial mass lesions in the upper gastrointestinal tract. J Gastroenterol Hepatol. John Wiley & Sons Ltd. 1■ A■heterogeneous■morphology■has■made■GIST■underrecognized■and■misdiagnosed A has made underrecognized and misdiagnosed 2Suspected GISTs identified by endoscopy can be furtherdifferentiated by EUSEndoscopic■ultrasound■(EUS)■is■more■accurate■in■identifying■GIST■and■predicting■true■tumor■size■than■endoscopy ■ is accurate in than identifying endoscopy in and identifying predicting true and tumor predicting size than true endoscopy tumor size1■–GISTs■typically■originate■in■the■fourth■layer■of■the■GI■tract,■the■muscularis■propriain the layer of the gastrointestinal tract, the (GI) tract, propria the muscularis propria■ –EUS■penetrates■the■5■layers■of■the■GI■tract■and■displays■areas■not■seen■by■endoscopythe 5 the tract and displays areas not seen endoscopyAs GISTs have malignant potential, 3 , a multidisciplinary approach thatincludes a medical oncologist may help optimize patient outcomesAnswers: 1 GIST■2 Duplication■cyst cyst 3 Carcinoid■tumor4 LipomaReferences: 1. Humphris JL, Jones DB. Subepithelial mass lesions in the upper gastrointestinal tract. J Gastroenterol Hepatol. 2008;23(4):556-566.2. Demetri GD. Gastrointestinal stromal tumors. In: DeVita VT Jr, Lawrence TS, Rosenberg SA, eds. DeVita, Hellman, and Rosenberg’s Cancer:Principles & Practice of Oncology. Vol 1. 8th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2008:1204-1217. http://www.cancerppo8.com.Accessed November 17, 2010. 3. Fletcher CDM, Berman JJ, Corless C, et al. Diagnosis of gastrointestinal stromal tumors: a consensus approach.Hum Pathol. 2002;33(5):459-465.Novartis Pharmaceuticals CorporationEast Hanover, New New Jersey Jersey 07936-1080©2011 Novartis Printed in USA 10/11 GDE-1031167
Living With GISTIt can take time to adjust to a diagnosis of GIST, but justremember to take it one day at a time. Deciding to playan active role in managing your condition can help youradjustment to living with GIST. Surgery to remove the GISTmay cause a variety of symptoms including abdominaldiscomfort or pain, fatigue, nausea or vomiting, and weightloss. Together with your healthcare team, you may be able toreduce the severity of these symptoms with lifestyle changes,including getting regular exercise, eating a nutritious diet,and reducing stress. If nausea and vomiting persist, ask yourdoctor about antinausea medications that can help control thisside effect.A team approachA multidisciplinary team of healthcare specialists will worktogether to help you. Whether you are diagnosed with localizedor metastatic GIST, you will work with a combination ofspecialists. This may seem a bit overwhelming, but don’t beintimidated. Working closely with your healthcare team mayhelp you feel more in control.Who is the GIST team?If your doctor suspects that you may have GIST, it’s importantto get a referral to an oncologist. An oncologist diagnoses andmanages cancerous tumors. Your oncologist is a key memberof your healthcare team and can help devise a monitoringplan. The following healthcare specialists may play a role inmanaging your care:• Gastroenterologist - Diagnoses and treats disorders of theGI tract. A gastroenterologist will help recommend follow-upcare regimens.• Pathologist - Diagnoses diseases by studying tissues, cells,and bodily fluids. For GIST, pathologists study tissues frombiopsies and surgeries.• Surgeon - Performs many different types of surgicalprocedures, including, in some cases, surgery for cancer.• Radiologist - Obtains and interprets medical images fromscans and other tests. A radiologist may also recommendadditional examinations.• Oncologist - Has training in the diagnosis andmanagement of cancer. An oncologist can help devise amonitoring plan.• Surgical oncologist - Has specialized training in oncologyand the removal of tumors. When GIST is localized and canbe removed, a surgical oncologist may remove it, and he orshe may help with management and monitoring.• Endoscopic ultrasound specialist - Obtains images andinformation about the digestive tract using an endoscope, along thin tube with a light and a camera.• Oncology nurse - Administers care and support for patientswith cancer. Your nurse will play a vital role after yourdiagnosis and during the monitoring of GIST.• Nutritionist - Specializes in diet and nutrition;can recommend dietary modifications and create apersonalized nutrition plan.The benefits of supportLiving with GIST can sometimes bring on many emotions,but you don’t need to make the GIST journey alone. You maywant to ask for help from your friends, family members, andother members of your community. You may also benefit fromjoining a support group for people with cancer or talking toa professional counselor. Building a network of support canmake all the difference.Want to learn more?The resources in this guide may provide you with additionalinsight into managing GIST.Follow-up visits with your healthcare teamare importantTo track your health over time, your healthcare teammay recommend:• Regular physical exams to check your overall health• Blood count monitoring to look for changesthat may increase your risk for anemiaSome scans your doctor may orderYour medical oncologist may recommend thatyou have the following scans performed routinely:magnetic resonance imaging (MRI), computedtomography (CT), and/or positron emissiontomography (PET) help to see if the tumors haverecurred or spread to other areas of the body(metastasized). Ask your healthcare team if you havequestions about any of these tests.To learn more about the importance ofpartnering with your GIST healthcare team, go towww.GISTtheFactsInfo.com/Learn5
Patient Resources for GISTThe following websites are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. Novartis PharmaceuticalsCorporation makes no representation as to the accuracy or any other aspect of the information contained in these websites.The Life RaftGroupwww.liferaftgroup.orgAddress:155 Route 46 West, Suite 202Wayne, NJ 07470Contact Info:Phone: 973-837-9092Fax: 973-837-9095Email: firstname.lastname@example.orgResources Offered:Webcasts and videosNewsletterEducational publicationsSupport groupReal-time consultationGIST SupportInternationalwww.GISTsupport.orgAddress:12 Bomaca DriveDoylestown, PA 18901Contact Info:Phone: 215-340-9374Email: Online formResources Offered:Website available in Spanish,Chinese, Italian, Hindi, and severalother languagesWebcasts and DVDsEducational books and brochuresDownloadable bookletGIST CancerResearch Fundwww.GISTinfo.orgAddress:Tania and Robert StutmanGIST Cancer Research Fund55 Sawmill RoadNew City, NY 10956Contact Info:Phone: 845-634-6060Email: Online formResources Offered:Website available in 30 languagesVideos from recent conferencesPatient guideSupport informationList of financial resources6
GIST CancerAwarenessFoundationwww.GISTawareness.orgAddress:11 Palmieri LaneStaten Island, NY 10309Contact Info:Phone: 718-966-7125Emails: Barbara@gistawareness.orgDorothy@gistawareness.orgBrian@gistawareness.orgBernie@gistawareness.orgResources Offered:Educational brochureLinks to other Internet resourcesPatient and family supportOnline newsletterNewsSarcomaFoundationof Americawww.curesarcoma.orgAddress:9899 Main StreetSuite 204Damascus, MD 20872Contact Info:Phone: 301-253-8687Fax: 301-253-8690Email: email@example.comResources Offered:Patient registryNewsletterEducational resourcesSarcomaAlliancewww.sarcomaalliance.orgAddress:775 East Blithedale, #334Mill Valley, CA 94941Contact Info:Phone: 415-381-7236Fax: 415-381-7235Email: firstname.lastname@example.orgResources Offered:Discussion boardPeer-to-peer networkFinancial assistanceNewsletterAmericanCancer Societywww.cancer.orgAddress:250 Williams StreetAtlanta, GA 30303Contact Info:Phone: 800-227-2345866-228-4327Email: Online formResources Offered:Educational materials available inSpanish and Asian languagesNewsLive chat lineBrochuresInteractive tools, quizzes, and videosCancerCarewww.cancercare.orgAddress:275 Seventh AvenueNew York, NY 10001Contact Info:Phone: 800-813-HOPE (4673)Email: email@example.comResources Offered:Online workshops and podcastsBooklets and fact sheetsSupport groupsFinancial assistanceAvailable in Spanish7
This GIST Resource Guide was sponsored by Novartis PharmaceuticalsCorporation. The guide is designed to be a summary of informationand not an exhaustive clinical review.Novartis Pharmaceuticals CorporationEast Hanover, New Jersey 07936 –1080 ©2012 Novartis Printed in USA 6/12 GDE-1040685