Gopher's Journey with Carcinoid tumor, Small Intestine Cancer

Patient: Small Intestine Cancer > Carcinoid tumor

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Male, Age: 62

  1. 1
    • Gopher
    • Experience with Carcinoid tumor, Small ...
    over 2 years ago
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    Misdiagnosed

    Oh No

    I was diagnosed in august of 2012. I found out the carcinoid tumors were what was causing my abdomen pain dating back to 2004 from scans I took with me to mayo clinic. My first scan was in 2004 and had many during the next 8 years all missed by local doctors. All telling me I was constipated.....one telling me I had gastritis and telling me I needed to have my gallbladder removed. I then went to mayo clinic in Jacksonville where the cancer was found. Scans dating back to my original visit of abdomen pain showed the tumor which was missed in 2004 and subsequent scans throughout the next 8 years.

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  2. 2
    • Gopher
    • Experience with Carcinoid tumor, Small ...
    over 2 years ago
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    Surgery

    Procedure or Surgery

    October of 2012 had surgery to remove mass in small bowel and messentary, 40cm of small bowel along with gallbladder and appendix. Successful but cancer had already metastasized to liver and other lypmp nodes too difficult to get to.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Gopher
    • Experience with Carcinoid tumor, Small ...
    over 2 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Received 30mg of sandostatin lar from nov 2012 through march of 2014 every 4 weeks. Tumors in liver began progressing in size in novemeber of 2013 and was invited to join a clinical trial.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • Gopher
    • Experience with Carcinoid tumor, Small ...
    over 2 years ago
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    Targeted therapy with infusions of radiation (lutate)

    Clinical Trial

    Began April 1 2014 with infusions of radiation....(lutate)....4 of them spaced 8 weeks apart. Have finished the 4 infusions and am now still in the trial receiving sandostatin lar 30 every 4 weeks.

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  5. 5
    • Gopher
    • Experience with Carcinoid tumor, Small ...
    about 2 years ago
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    Side Effects

    This person has yet to add any details about this experience.

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