asmith

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  • in reply to: 2 years 5 months post surgery, 2 years post radiation #96874
    asmith
    Participant

    Thank you

    in reply to: 2 years 5 months post surgery, 2 years post radiation #96869
    asmith
    Participant

    Thank you, its nice to know that I’m not the only one going through this period of “what’s going on here”.

    in reply to: from HH to CC #92454
    asmith
    Participant

    Regarding molecular testing, I went back to the pathology report and saw this;
    The following statement applies to Histochemical, Immunohistochemical, Immunofluorescence, In Situ Hybridization
    (ISH or FISH), and/or molecular test(s) if documented as performed on specimens reported in this case: The test has not been cleared or approved for the specific use by the U.S. Food and Drug Administration. FDA does not require this test to go through prernarket FDA review. This test is used for clinical purposes. It should not be regarded as investigational or for research. This laboratory is certified under the Clinical Laboratory Improvement Amendments 1988 (CLIA) as qualified to perform high complexity clinical laboratory testing. All stains and tests are performed with appropriate positive and negative control reactions and all controls show appropriate reactivity. However, stains and tests have not been validated on decalcified tissues. Results should be interpreted with caution given the likelihood of false negativity on decalcified tissues. Certain tests utilize Class I
    Analyte-Specific Re·agents (ASR); these tests are developed and
    their performance characteristics determined by this laboratory. ASRs used in this laboratory have been established and verified for accuracy and precision. Additional information about this type of test is available upon request.

    So I suppose that it would be available upon request?

    in reply to: from HH to CC #92456
    asmith
    Participant
    Lainy wrote:
    DJust please make sure that the DOC you end up with is experienced in treating CC as it is still so rare. B

    The only doctors we found who had actually had treatment history with cc was the one at Memorial Sloan Kettering. We did not like their approach, all of their patients needing treatment were put through the same protocol, and that differed from what our surgeon told us was the best way to go forward. I have to say here that Art really liked and respected our surgeon. He is the head of the liver transplant department at Mt Sinai, and he is the one doc who has seen more cc than anyone, I think. Our current oncologist, actually both (we still use the one in NYC as a consultant) have experience with liver and pancreatic cancers, and I think the NYC doc also has treated cc patients.

    For something so rare, its strange that we personally, since Art’s diagnosis, have met 4 people who had this same thing. One woman’s son, in his 40’s is dealing with chemo, not a surgery candidate, and the other three had the tumor in the same place, only it was benign in their case. Once was a girl in her early 20’s.

    in reply to: from HH to CC #92455
    asmith
    Participant
    marions wrote:
    Art’s weight will return to normal, but give it some time. You may find that he is sensitive to foods with high fat content and most likely he is plagued with indigestion, a common occurrence with biliary surgery.
    I forgot to mention also that his appetite is good, its just the volume that is the limiting factor. He does try to eat all day long, which is what he has always done anyway. It is also amazing to me that he has no digestive problems with any foods, for someone with no more gall bladder. The only thing that bothers him still is cheesecake. But he can enjoy a cheeseburger. Go figure.

    Marion

    in reply to: from HH to CC #92457
    asmith
    Participant
    marions wrote:
    You mentioned sugar-coating test results leading to a false sense of security. Would you mind sharing this experience with us?
    Well, from the beginning, after we did get to see the radiologist report from his very first at scan, it clearly said that it was most likely Klatskin tumor. Both gastro docs declined to share that with us as they sent us off to the surgeon. Of course, we didn’t press them either, I’m sure we were scared to ask. Our experience has been that a decent percentage of these doctors are uncomfortable with just how to handle life and death situations with patients, especially new patients.

    After Art’s surgery, the words that I will always remember were “just a microscopic trace” on the path report. Now, its true that all his tested lymph nodes were clear, but there was something in the path report that concerned our current oncologist, “Lymphovascular invasion and extensive perineural and intraneural invasion are present.”

    I am wondering: has Art’s tumor tissue been tested for molecular alterations?
    I asked about that once but if I remember correctly, the oncologist in NYC told us that there are no studies to help so it would be of no use. We will ask this new oncologist when we meet him for follow-up after his PET scan next week.

    Marion

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