• Anybody here have a reoccurring GIST? Anybody have one GIST, even? I know they are fairly rare.

    Asked by Molly72 on Friday, November 9, 2012

    Anybody here have a reoccurring GIST?
    Anybody have one GIST, even? I know they are fairly rare.

    I had a small one removed last year, now I have a feeling it might be coming back.
    Little achy pain in stomach, maybe a lump & am very tired many days, am going for a CT scan in a month.
    But would like any feedback from a fellow GIST patient.

    2 Answers from the Community

    • carm's Avatar

      Hello, I am an oncology/ end of life nurse and maybe I can shed some light on this subject. GIST or Gastrointestinal Stromal Tumors are so very uncommon, very rare. At last check (2009) it was one person in 7 million or approximately 1500 a year in the US. The bulk of the diagnosis are found in persons over 50 and are slightly more common in males with a higher incidence with African Americans. There are no known risk factors for GIST and in fact with a scant abnormality in the c-kit gene, there is no hereditary trait associated either, so the majority of GIST diagnoses are just sporadic in nature. Surgery is the frontline treatment, and if the tumor is completely resected, there is no further treatment necessary. If yours was confined to an organ, I would think you have no worries. If you had it in nearby tissue or it had spread to distant sites then you would have gotten more than surgery. The way you are feeling is more nerves as the symptoms you mention are not associated with GIST, but I can understand the stress many patients find themselves in. It is always good to be cautious and great to want to know and understand your disease, but sometimes you have to force your self not to look behind you, its the best and only way you can truly look ahead, life beckons you and you cannot grab onto it if your hands are still holding the past. Best of luck to you, Carm.

      almost 4 years ago
    • BarbarainBham's Avatar

      I had surgery in February for a GIST in my stomach and I will be starting Gleevec this week. Depending on the size and the rate of growth, I've been told a GIST is usually very aggressive, but the Gleevec is very effective. Mine had positive margins (microscopic), and because it was so close to my esophagus, the surgeon thought it best to do it the way he did for quality of life. If you are still reading, I would love to know things have gone for you.

      over 3 years ago

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