• So rare they don't even know what it is? Colon cancer, cancer in the omentum, pancreatic tumor marker count high, but ct says pancreas ok??

    Asked by blueorchid on Friday, April 13, 2012

    So rare they don't even know what it is? Colon cancer, cancer in the omentum, pancreatic tumor marker count high, but ct says pancreas ok??

    My mother was diagnosed with colorectal cancer march 8. She had a bowel resection done on the 11th, and they found that the cancer had spread outside of the colon, to the omentum, as well as a nodule on the inside of the belly button. The surgeon removed all of what he could, and 13 lymph nodes. Only 1 lymph node came back positive for cancer. However, the pathology report is inconclusive and the specimen is on its 3 or 4th review, somewhere out of the country. All they can tell us is her cancer is extremely rare, (the main tumor is not acting like a primary....) and that none of the pathologists can figure it out. The latest is that her pancreatic tumor marker is very high, but the CT shows nothing wrong with the pancreas??? Has anyone ever experienced or heard of anyone experiencing anything like this?

    6 Answers from the Community

    6 answers
    • abrub's Avatar
      abrub

      blueorchid - some people in the Toronto area have been treated at Roswell Park Cancer Center in Buffalo. I don't know where in Canada you are, but there are people there familiar with some of the rarer colorectal cancers. I can probably get you more info. Let me know if I can help.

      Alice

      about 9 years ago
    • saltermd's Avatar
      saltermd

      This is unfortunately a common problem for pathologists. Tumors are often evaluated by looking at a series of stains called IHC. The pattern of staining will often help determine the cell of origin and thus (hopefully) give the oncologist a better idea of prognosis and help to guide chemotherapy selection. It is not a precise science. Even the "best" pathologists at the best centers will disagree on conflicting cases. In these circumstances, the doctor will have to make an educated guess as to what the most likely source of the cancer was and what to use for treatment . It can be very frustrating for patients since they are often left without a specific diagnosis.

      about 9 years ago
    • blueorchid's Avatar
      blueorchid

      So.... the newest thing is now the pancreatic tumor marker level is way down.... It was at 6000, now at 64!!!??? Don't get me wrong, SO HAPPY! But what would cause such a huge discrepancy? She has not started treatment yet. Has anyone else heard of this before?

      about 9 years ago

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