• 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
    • GregP_WN's Avatar
      GregP_WN

      I cant help you too much on this, only to tell you someone here probably has a similar experience. My three times with cancer have taught me that I need to have faith in my doctors. I had a great group at Vanderbilt Medical Center in Nashville. They put me totally at ease, I hope your group of medical specialists will do the same for you. Its easy to get excited, especially in the beginning, but the Medical specialists do have a plan. Best of luck to you, I hope everything works out great fo your mom. I lost my Mom to lung cancer, and my dad to prostate cancer, so I know the feeling. Wish her well for me, and give her a hug and tell her you love her. One day, no matter how this works out, you won't be able to do that any longer.
      Good luck!!!

      almost 5 years ago
    • abrub's Avatar
      abrub

      I would recommend getting your mother's slides to Memorial Sloan Kettering in NYC and/or MD Anderson in Texas. Both have lots of experience with rare cancers. My rare colorectal cancer was appendiceal in origin, and was found surrounding an ovary, all over my omentum, and throughout my peritoneum. Your mom should ask about intra-peritoneal chemo, heated or not, depending on who she goes to. Mine was not the heated, but I had 5 cycles of IP chemo. Of note, 5 years out from a stage 4 cancer diagnosis, I am doing great.

      almost 5 years ago
    • blueorchid's Avatar
      blueorchid

      Thanks so much for your responses. I don't think I have any control over where her slides go, as we are Canadian.... we know they have been sent to the US, because as soon as they cross the boarder, her surgeon says he is no longer told where it goes until the report comes back?? I thought that was strange, but I guess the system is working if they keep sending it out..... abrub, congrats on doing well 5 years out of a stage 4!!! That's amazing! I hope mom will have the same results. She says she feels great, (although she is stressed bc no one can tell her whats going on.....) As for trusting our team....we don't really even have one yet! Her first visit to the oncologist won't be until the 23rd of april..... Will stay in touch! Have a great weekend everyone :)

      almost 5 years ago
    • 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

      almost 5 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.

      almost 5 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?

      almost 5 years ago

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