introduction and weird story

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  • #52369
    marions
    Moderator

    Pam…..For all we know and what we hope for is that you are free and clear. And that is fantastic news. Enjoy your life;there is much to celebrate.
    All my best wishes,
    Marion

    #52368
    pgochenour68
    Spectator

    I went to the oncologist Thursday. The PET scans revealed no cancer. As of this time, my oncologist has declared me in remission.I go back in three months unless I experience any symptoms. I am so glad about this diagnosis. So glad. I can’t figure out how a Stage 4 carcinoma gets discovered like that but I am really glad it did. OSU is a great medical center. I will write back later on. Pam

    #52367
    pcl1029
    Member

    Hi,
    It is not a bad idea to ask the oncologist on Thursday what is the correct diagnosis?
    Is it Carcinoma of the Unknown Primary (CUP)?
    If so, ask the doctor WHERE he thinks the cancer begins and the number of the organs that have been affected based on the results from the PET scan.This way it will help you understand your illness better.I am not a doctor but a cc patient.
    Your are in good hands at OSU for clinical trial.

    Below is a quoted message from this web site whose dad had CUP diagnosis.in May,2011.

    quote=kamnbelle]Hi, all. My 74-year old father definitely has cancer, they are having a difficult time determining what the tissue of origin is. His oncologist at MD Anderson used the following factors in diagnosing cholangiocarcinoma:
    1. Pain in upper right quadrant and corresponding back pain;
    2. retroperitoneal mass which biopsy showed adenocarcinoma likely from pancreas, biliary, stomach, colon, prostate, lungs
    3. Stains showed CK20 neg and CK7 positive; plus tumor markers normal except for elevated CA19-9
    4. Normal PSA – ruled out metastatic disease from previously diagnosed and treated prostate cancer (with radiation)
    5. CT scan w/ contrast showed suspicious tissue and slight dilatation of duct in segment VII of liver
    6. Mass which includes positive lymph nodes immediately adjacent to suspicious tissue mass; also positive para aortic, mesenteric lymph nodes
    7. appears to be no growth into any other organs (i.e., pancreas, abd aorta, SMV)

    So, basically the doctor staged him as IV because there were positive lymph nodes that were not immediately adjacent to the suspected TOO (tissue of origin). Various MRI, PET scans, etc. show no mets to any other organs or brain or bones – just these lymph nodes. The oncologist will not refer us for a surgical consult b/c he said it’s so obvious that it is not resectable. As I understand it, the only chance at a “cure” is complete resection.

    My dad has not lost weight, has a slightly reduced appetite; and the pain in his abdomen only started in December 2010. He has been taking pain meds for a month now and he has to take more and more to control the pain.

    Dad will start cistiplatin and gemzar this week; one infusion every 14 days; then back to MDA in eight weeks to determine if the lymph nodes are responding.

    God bless.

    #52366
    pgochenour68
    Spectator

    My name is Pam. They took the cholangiocarcinoma out, and have not found the primary site yet. They have done PET scans, Ct scans and MRI scans. The CT scans and MRI scans were clear. We have not received any results from the PET scan yet. I just had it done Tuesday. We have an appointment Thursday. I have received really good care from OSU. I had not been experiencing any symptoms except symptoms which were consistent with endometriosis or ovarian cancer. Once the cyst was gone, I really have not been experiencing any symptoms. I have been tired but my family doctor put me on Effexor which caused some sleeplessness. We got a second opinion about the cholangiocarcinoma from Johns Hopkins and they agree with OSU. I am sure I am a source of interest for oncologists.

    #52365
    marions
    Moderator

    Pam…welcome. indeed your story is interesting and confusing. I don

    #52364
    lainy
    Spectator

    Dear Pam, welcome to our wonderful family but sorry you had to join us. I am a tad confused. Did the CC cause the cancer on the ovaries or are they 2 separate issues? Honestly it all sounds so strange. Had you had any symptoms? I would gather all your medical history and Lab work and get another opinion. We are strong believers in 2nd and 3rd opinions. Hope you are feeling good now but you really should find out what kind of cancer you have, if any. May I ask where you are being treated? Is there any follow up on your condition by the ONC? Looking forward to hearing more about this and perhaps we can be of more assistance then.

    #52363
    nancy246
    Spectator

    Hi Pam, Welcome to our board. Your story is interesting. Did they find cholangiocarcinoma on the ovaries or anywhere else besides the liver? I would be sure to get a second opinion and even a third. Try to get to a specialist familiar with cholangiocarcinoma.
    You definately need more answers before pursuing treatment. We have had a couple of members who were told they had bile duct cancer and then found out it was not. All tests are not foolproof. It is good news that your scans are clear! Wishing you all the best and that you get some solid answers soon. Nancy

    #5581
    pgochenour68
    Spectator

    Hello everyone. My name is Pam. I have an interesting story. On april 15 I was diagnosed with ovarian cancer. On May 2, I had a hysterectomy. 2 weeks later, they told me I did not have ovarian cancer. My surgeon had removed something from my liver and it was what they say is a stage 4 bile duct cancer. I have had several scans since then and nothing has shown up on the scans.

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