Discussion Board Forums General Discussion I need some suggestions please.

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  • #34829
    marions
    Moderator

    Stan…I am glad to hear that things are being sorted out. Having someone accompany you to your doctor’s visits always is a great idea. Good luck and please, keep us posted.
    Marion

    #34828
    scarman2009
    Member

    Ah! I’ve met with Dr. Fisher before, and I am considering attempting to get on his list of patients again.

    I did receive a phone call from my surgeon’s office at Stanford. He is the one who suggested the biopsy to my local oncologist. The local oncologist ordered the biopsy. My surgeon’s staff member indicated that normally when two physicians discuss and decide on a treatment or test, the physician coordinating the tests would then phone the patient. My oncologist missed that.

    Stanford staff indicate that a biopsy of the lung isn’t practical, that because the left lung rides on top of the liver, and near where the cut was made for the resection, that a biopsy of the area that also showed PET positive will determine if we’re still looking at CC or if another cancer has started.

    Wow… that was a run on sentence…

    So now I have some information and I don’t feel like I’m in limbo so badly. I am taking my little sister and my mom (two scrappy broads) to my next appointment with the oncologist on Monday. Then I’ll be letting the doctor know that he’s going to have to make sure that I’m in the loop when it comes to my care. Also, if I find that he is still giving me a feeling of disinterest, I’m going to start shopping for a new oncologist.

    marions wrote:
    Stan,
    I am wondering: The oncologist who did not identify your PET scan as positive, is he the same physician, who ordered a biopsy?
    Is the biopsy to determine metastases of Cholangiocarcinoma or, is there concern that it may be a secondary cancer?
    Also, how many CC patients has this oncologist treated and how have they faired. I think that this is a very important question to ask. I realize that you may not have many oncologists to draw from living in Chico but there must be at least one other with whom you could consult.
    Also, your records are at Stanford already. Have you thought of consulting with Dr. George Fisher? Dr. Fisher has extensive experience with Cholangicocarcinoma patients.
    Just in case, here is his info:

    300 Pasteur Drive
    Stanford, CA 94305
    (650) 498-5710
    Best wishes coming your way,
    Marion

    #34827
    marions
    Moderator

    Stan,
    I am wondering: The oncologist who did not identify your PET scan as positive, is he the same physician, who ordered a biopsy?
    Is the biopsy to determine metastases of Cholangiocarcinoma or, is there concern that it may be a secondary cancer?
    Also, how many CC patients has this oncologist treated and how have they faired. I think that this is a very important question to ask. I realize that you may not have many oncologists to draw from living in Chico but there must be at least one other with whom you could consult.
    Also, your records are at Stanford already. Have you thought of consulting with Dr. George Fisher? Dr. Fisher has extensive experience with Cholangicocarcinoma patients.
    Just in case, here is his info:

    300 Pasteur Drive
    Stanford, CA 94305
    (650) 498-5710
    Best wishes coming your way,
    Marion

    #34826
    gissy
    Member

    Hi Stan
    sorry to hear about your doctor but I must agree with Lainy. Change doctors. You need support at this time so go and find another one. Good luck with everything. Julie

    #34825
    lainy
    Participant

    Stan, I am sorry as this may not be the answer you are looking for. Grab all your test results and head for another doctor. If you feel he is not interested I would dash to another. Listen to your gut…it’s usually right.

    #34824
    darla
    Participant

    Hi Stan,

    The issues involving a needle biopsy were recently discussed on this thread:

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=25755#p25755

    I think it started around the 10th posting. Hope this is somewhat of a help to you.

    From what you have said, I would be asking a whole lot of questions!

    Good luck to you. I will be hoping fo the best for you.

    Darla

    #3090
    scarman2009
    Member

    Ok gang, I need some help brainstorming some questions that I should ask my oncologist on Monday the 25th if January.

    First of all, I was diagnosed in Mar of last year. Had a liver resection, my gall bladder removed, part of my bile duct and a lymph node. I followed that up with Gemzar.

    During my last month of Gemzar, my CA 19-9 marker began climbing. I went from 16 on two tests to 50 something the next month to 93 the next month. In December we did a PET/CT scan and my oncologist said that I was good to go, that there was no positive in the PET and that something else could be causing the marker to climb.

    That brings me to January. Last week I had a follow up CT scan and a meeting with my surgeon at Stanford Medical Center. I also presented my PET/CT scan from December. When I got to see the surgeon, he arrived with the bad news that I now how 2 spots on my lung that are a bit smaller than a pea and a spot near the lymph node area around my liver. He indicates that the lung spots are cancer and that they were PET positive on my December scan.

    Now my oncologist wants me to do a CT Guided biopsy using fine needle aspiration on the porta hepatis.

    This oncologist replaced my first MD who left to Washington. He seems to be disinterested at best when it comes to my condition and the treatment… and now it appears he wants to do tests that I’m not so sure I wish to do again unless he has a really valid reason. I mean… I have cancer already… do I really need to go through another painful biopsy?

    So, for your help in this…

    What questions should I now be asking? Some that I have on my notepad already are…

    1) Why the biopsy?
    2) What is our plan of attack? Chemo, Radiation?

    Any others? Your help would be greatly appreciated on this.

    Thanks bunches,
    Stan

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