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Thread: Neuroendocrine Carcinoma - metastatic to liver with CUP

  1. #1

    Neuroendocrine Carcinoma - metastatic to liver with CUP

    My name is Maryjane and I'm 30 years old. When I was pregnant with my son in 2005, I had a gallbladder attack and during an U/S in the ER, a 10cm tumor was found with my gallbladder wrapped around it. I had a biopsy done in which I was told it was cancer, but then at the last minute had a CT scan done (the Friday before my scheduled surgery) in which the surgeon then told me it was a benign liver tumor called Focal Nodular Hyperplasia. So, I put off surgery because I was pregnant, and then breastfeeding and finally had the surgery last June 22, 2007. The tumor was removed and pathology has positive stains for Chromogranin-A and Synaptophysin and determined it was Neuroendocrine Carcinoma. The tumor was not within my liver, but rather attached by a small 1cm stalk hanging off the bottom of the liver. They are fairly certain it's not the primary.
    A few weeks ago on March 10th I had surgery to remove what was THOUGHT to be the primary tumor from my small intestines but instead it turned out to be ectopic pancreas, or basically pancreas tissue. No cancer. Had lymph nodes removed, and appendix - no cancer there either. Since last June, we've been on the hunt for the primary but still have not found it. My Oncologist said it's possible that maybe the primary was killed off by my immune system, but I'm hesitant to believe that.
    I have no idea where it could be. My tumor was non-functioning so I never had symptoms which scares me because I really believe that I've got a primary tumor somewhere and it just doesn't want to be found.

    I've had an Octreoscan done, which came back clean. I've had CTs - all clean. Tumor markers for CGa, Serotonin serum, Neuron Specific Enolase, and 5-HIAA Urine are all good.
    I'm not sure what my next step should be. If I should pursue the hunt for the primary or just get my periodic bloodwork and urine test done?

  2. #2
    mjlueck, I am very sorry about your cancer. It is so hard to know what to think or do when they cannot find the primary. However, that is not that uncommon. No one really knows why cancers of unknown primaries exist. Some think that the person's immune system has killed the primary cancer; others think that the primary is just too small to be detected. It might be both.

    Nevertheless, the treatment is always the same... some form of chemotherapy to kill the cancer where ever it is.

    You are in my thoughts and prayers.
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
    Hi, Thanks for the response!
    My Oncologist said that Chemotherapy doesn't really "work" on this type of cancer. So my treatment is basically done now and I will have tumor markers and scans done every 6 months for awhile to monitor me.
    It's frustrating but I guess it's time to try and forget about it and move on with my life. This whole experience has been frustrating for me because I don't feel like I'm getting any answers or closure on this. My Oncologist doesn't even want to see me because I'm not getting chemo or radiation. He's very uninvolved.
    I wish I had gotten some normal type of cancer where everyone rallies around and gives me the care and answers I need. I feel like the more rare forms of cancer often get shoved under the table while things like breast cancer get all types of attention and publicity. The rest of us just sit here with something horrible and rare and everyone acts like it's no big deal.
    Ok, my rant is over.


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