Discussion Board Forums General Discussion Mayo Clinic – International Experience

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  • #37741
    ashley
    Participant

    Dianne,
    Do you think your father could qualify for the transplant protocol? that is the Mayo’s speciality.

    Here are a few criteria:

    tumor under 3CM
    no mets
    mid 60’s or younger
    otherwise healthy

    As for surgery, we found different docs who looked at my mom’s scans. some said they could do surgery some said no. that’s the weird part – you have to go out and collect opinions and they never seem to be the same. I sent my mom’s scans to many docs.. some docs emailed me, some called, some we needed an appt with – they all seem to be different. I have found through this board and our experience that usually surgery or transplant is what you would aim for first ( or sometimes chemo can shrink the tumor first to allow surgery). After that there are many other options: chemo/microsphere/pdt/rfa/brachytherapy/radiation, etc.

    I’m assuming a Mayo deposit would most likely be reimbursed later by your insurance? I know Raye paid for his transplant initially out of his own pocket because of the insurance lag being outside the US and he needed to get the protocol started. I believe he was then reimbursed once it was approved.
    Good luck
    Ashley

    #37740
    dianneh
    Participant

    All I want to know is, what treatment options does Mayo have that my Dad could benefit from.

    They do not say, “Based on what Dr so and so has seen from your fathers imaging and medical notes, he feels that your father would benefit or be an good candidate for a surgical procedure, a new chemo or radiation treatment… they refuse to tell you anything until you pay!

    Dianne

    #37739
    damamma
    Participant

    I would be very interested in reading your PDF Dianne. I too am in Ontario and would love to hear how this has gone for you.
    My sister has been deamed “Inoperable” and if there was some option for her other than simply “palliative chemo” we’d certainly explore it.

    #37738
    marions
    Moderator

    I also wanted to include the link to the Mayo Clinic Liver Transplant Protocol:
    http://www.mayoclinic.com/health/liver-transplant/MY00349

    #37737
    rick-kamp
    Member

    Dianne,

    I strongly recommend that you lookup and contact our member RAYE. He went through the international program with Mayo Clinic and I know he had a bump or 2 in the road, but it was well worth his hassle to consult there.

    I believe that you need to work out some sort of payment arrangements with your insurance carrier and get approval but after that I don’t think you have any out of pocket costs. Mayo Clinic, like any other hospital, needs to secure payment for their services and since you are international they have different policies. Hopefully you can work this out. It might be worth the 2nd opinion.

    Rick

    #37736
    rick
    Keymaster

    Dianne, you can’t “attach” it, but if you email it to me I can upload it and I can post a link to it.

    rick@cholangiocarcinoma.org

    #37735
    marions
    Moderator

    Dianne…I will contact Rick re: the PDF file.

    #37734
    dianneh
    Participant

    Sorry,

    How do I attach a PDF file that I made of the Mayo file they sent me? It’s actually a Word document that I made into a PDF.

    Dianne

    #3500
    dianneh
    Participant

    Thought I would post what my experience has been with Mayo Clinic, Rochester Minnesota.

    At their web site you are instructed to send all imaging and Dr. reports to them, to which they give a reference number. With-in 2-3 days a Dr. looks over the imaging and reports, decides if they have anything to offer and if they do, an email is then sent with a pre-arranged appointment date and time.

    They do not tell you what they have to offer at all, you either accept it or you don’t. If you do accept the appointment then you are required to give them a deposit of $3000-$5000, possibly more.

    Find attached the response that was sent to me, I’ve blacked-out personal information.

    D:UsersDianneDocumentsDadMedicalMayo Clinic International Response.pdf

    There is however the less expensive “E-Consultation”, which you must have a Dr. in your own country contact them. Pricing for this starts at $750. They would not give me this information in an email, I had to phone for this info.

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