please give me your experience

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #28109
    devoncat
    Participant

    Ana,
    Yes get that second opinion and third if need be. They might have wanted to wait on the chemo to give your husbands body a chance to heal from the ERCP.

    Kris

    #28108
    roma35
    Member

    Ana,
    I am so sorry for you and your husband. I think your doctor is a bit clueless or indifferent, either of which is a bad thing. I think you said you are meeting with the Doctor again, is that in two weeks? can you call the Dr. and ask why a stent is not an option to relieve the jaundice? It just seems to me, something can be done to relieve his discomfort.

    #28107
    jamie-d
    Member

    Hi Ana;
    I would also suggest you seek another opinion. Find someone you are comfortable with and that you feel is working with you to fight this.After I was told I had a tumor that was almost 15cm in my liver and there was colon and lymph node involvement I had to wait almost 3 weeks for the pathology report to finally come back before they would do anything. During that time my family had me take some alternative supplements (milk thistle, green juices, Genesis juice). Waiting can be very difficult. I will keep you and your husband in my prayers.
    God Bless,
    Jamie

    #28106
    marjo
    Participant

    2 weeks here, 1 month there, another week here. All the time we are anxious. Gather up all that future stress in a big assertive package and badger, badger, badger.

    #28105
    tess
    Member

    Hi Ana, we were told to send the scans & imagery on CD along with any doctors notes, in a Fedex package- overnight delivery, so that the package can be tracked. We called ahead to the doc. offices, underscored the urgency of receiving the additional opinions on potential treatment options, & let them know we’d send the records ASAP. We then followed up with calls to make certain everything arrived & to receive feedback on the reviews. The hospital sent the CD scans and doctor records, along with a template letter that we designed for each doctor, which was helpful as we received second opinions from about a dozen doctors and they may at times run upwards of $40 each to mail. We too did this within days of receiving the diagnosis.

    Best of luck to you,
    Tess

    #28104
    jur777
    Member

    Yes, send reports to other doctors. Even if you’re happy with the doctor you have, some times for convenience sake you end up with another doctor or group of doctors. That’s what happened with me and it’s worked to my advantage so far.

    #28103
    lainy
    Participant

    Ana…do it yesterday!

    #28102
    marions
    Moderator

    Ana….absolutely, now is as good of a time as any. Please, make sure to have on hand all reports including, original scans, blood test results, doctor’s notes, etc.
    Good luck,
    Marion

    #2210
    aneux
    Participant

    my husband ercp went fine, except the klatskin tumor is there, inoperable, his onc never even called us. i just called the office and was given a message to come back in two weeks and they’ll check his levels and maybe do chemo then. he is very uncomfortable and getting yellower. he’s going to freak when he finds out the doc just put him off for two weeks, but i did insist on an appt with him just to regroup.

    meanwhile, i am going to broach the subject with my husband about sending his reports and images to other doctors. i’ve gotten some good names from this site. does it sound reasonable for me to do this now? or any other ideas.

    thanks so much
    ana

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