• Has anyone else here who has been diagnosed with G.I. cancer been told they can't find the source?

    Asked by KimGawitt on Monday, June 30, 2014

    Has anyone else here who has been diagnosed with G.I. cancer been told they can't find the source?

    My docs "suspect" small intestines but can not physically find the source or original tumor. This is so hard to accept. How will they know how I'm doing if they can not find the original tumor?

    7 Answers from the Community

    7 answers
    • GregP_WN's Avatar

      Have they done a PET Scan? This is a like a CAT Scan but you are given a shot of a dye that will show up under the scan, this solution makes the cells in the body that are taking up the sugar in the solution glow red under the scan, thus alerting the doctors to that spot as being suspicious for cancer. This is a great test, and usually done early on. Ask if they have one planned, maybe there is a reason not to, but I don't know what it would be.

      over 6 years ago
    • glam's Avatar

      please ask your doctors why a pet-scan could not determine the origin of your cancer... from my understanding this exam will light up all cancer cells in your body and doctors will be able to have a map of affected area.....once they know all compromised area they could, probably, be able to get a small piece of the tumor in the place they believe is the main tumor and through a biopsy have it confirmed or not....talk with them if they considered this possibility and why it was discharged.....if you don't feel comfortable with what they tell you ask for a second, third and as many opinions as you need till you find those doctors that you trust and that can explain you treatments, stage, purpose of treatment, etc...wishing you all the best....God bless you and continue blessing all of us

      over 6 years ago
    • cam32505's Avatar

      I have heard of cancer from unknown origin, which you will probably find others out here with that. I can tell you that no matter what kind of scan, nothing is 100%. My brother had throat cancer, which his doctor could plainly see with a scope, but it didn't show up on his cat scan.

      over 6 years ago
    • FreeBird's Avatar

      Sometimes there is no primary tumor. My dad had no primary tumor with pancreatic cancer. So the scans only showed the secondary cancer in the liver. The diagnosis went on probability, based on the tumor marker blood test, and a test called "tissue of origin" that was done with the tissue sample taken from the liver biopsy. This test ruled out his previous cancer, lung cancer, and showed that the cancer cells likely originated from the pancreas. How they determined whether chemo was effective was with scans of the secondary tumor, and the tumor marker blood test.

      over 6 years ago
    • FreeBird's Avatar

      (or no visible primary tumor)

      over 6 years ago
    • KimGawitt's Avatar

      I have not had a pet scan yet. I did ask for one and was told not at this time. I am scheduled for another contrast CT scan on 7/15. But that will only show how the tumors that spread that they can see are doing. I will ask for a pet scan again when I go for chemo on 7/3.

      over 6 years ago
    • contrail's Avatar

      I have small intestinal carcinoid cancer that was found with a metastesized tumor in my small intestines. It had already metastesized to my liver and was causing what is known as carcinoid syndrome. So far, they have not found the primary tumor. They have done a test on the surgical tissue and know it's located in the jejunum/illeum area of the small intestine, but that's it. So far the doctors don't seem too worried about finding it and removing it. Like they say, it wouldn't change the treatment, which it probably wouldn't, but I'd feel better if it was out.

      over 6 years ago

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