Viewing 15 posts - 1 through 15 (of 16 total)
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  • #19499
    colleen
    Participant

    Lisa – no one has ever said directly what could or would happen with the tumor wrapped around the vena cava. I know the tumor has caused narrowing of the vena cava, which they keep an eye on. From what I have read, if the tumor was to compress it too much, so that blood flow is affected it would be very bad. Unfortunately my husbands tumor is wrapped around all the major blood vessles/supplies in and out of the liver, which of course isn’t good and is the main reason we have been given for no surgery or transplant options. The main concern right now is trying to stop the spread of the cancer, which has been spreading out of control since January in his bones and lungs.

    If you would like the contact info for Mayo and Hopkins that I have, just let me know and I will email to you, it is definately worth a try.
    Colleen

    #19498
    lisa
    Participant

    Colleen, did anyone say what would or could happen with the tumor wrapped around the vena cava?
    I think I will take your advice and send copies of the records to Mayo and Hopkins. It’s worth a try anyway.

    #19497
    colleen
    Participant

    Lisa – My husbands doctors told him the same thing regarding the tumor being around the vena cava. For our own piece of mind we did get a second and third opinion from Hopkins and Mayo (MN). They too agreed that besided chemo there wasn’t much that could be done because of the location of the tumor. Hopkins did offer my husband chemoemboliztion which killed almost 50% of the tumor, but not around the vena cave. My husband is now getting ready to start back on gemzar after finishing a round of radiation for mets to his spine, neck and skull. Both Hopkins and Mayo simply had us send copies of his latest scans and supporting information regarding the tumor location, treatments to date, etc. It was really simple and would be worth a try, for your own piece of mind. – Colleen

    #19496
    marions
    Moderator

    Lisa,
    thinking of you and wishing for the absolute best. Please, stay in touch and share with us the chemotherapy you are opting for.
    Hugs
    Marion

    #19495
    lisa
    Participant

    My doctors are really discouraging me about getting 2nd or third or fourth opinions. They said that there is really nothing more to be done except for chemo again, because of the size and location of the tumor around the vena cava. Any other doctor will say the same thing.

    I’ll be seeing my oncologist on Friday, and I’m going to tell him to give me all he’s got (chemo wise). Sock it to me. I’ve got my battle scars, and am willing and able to fight this thing to the end.

    #19494
    pderat
    Member

    Hi Lisa-I know at this point you probably feel you can’t muster the energy for more fight but fight as much as you can. I keep thinking of that women on the news lately whom “they” told her tumor was inoperable and some doctor pushed forward and in a very long surgery removed all of her organs, got the tumor, and then put all her organs back in and they showed her on TV going home from the hospital. Thinking of you and hoping for an outcome that is best for you. Patrice

    #19493
    kate-g
    Member

    Hey Lisa,
    SO so sorry to hear your news. Haven’t been by for a couple of weeks, and remembered you were having surgery, so was really sad to hear your news. I have to say, if I was in your position (which of course I’m not), I think I would go for another opinion, and sod the financial stuff. It’s your life!! If someone MAY be able to help, you need to check it out I reckon!
    I can’t imagine the shock of going in for the op, and waking up to this news.
    I’m sending you loads of love and hugs from UK!
    Keep going, don’t give up, coz……..YOU’RE WORTH IT!

    #19492
    heatherkp
    Member

    Hey Lisa….Our surgeon…the best in the state of Arizona….referred us to Mayo in Rochester…we leave April 12…7-10 days of intense testing for liver transplant…this is our only hope…we know it is our only chance for winning this battle….you are so right considering the fact of expenses…we were worried sick over it….but ultimately we decided it was our ONLY chance…and because of our support system and God….everything fell into place and is taken care for us….it brought us to our knees…a great lesson in humility and neverending thankfulness…a great lesson that when all hope seems to lost…even the tiniest flicker is still there and rescues our hearts…don’t give up…we will be praying for you….we have ALL the info you need to get the ball rolling! We are here for you! God bless you!

    #19491
    lisa
    Participant

    I’m still chugging on… I’m just confused because one doctor says transplant may be an option, and another says that it’s not an option – both on the same day. I’m seriously considering going to Rochester for another opinion because of their experience with this type of cancer.
    Not that I can really afford the trip and the stay, but right now I don’t think that I have a lot of options left.

    #19490

    Hang in there Lisa. The Doctors look at me and said they were sorry. That was in Dec 2007. Today they can not find any cancer

    #19489
    belle
    Participant

    Sorry to hear of your sad news. We had the same experience with my sister and it’s somehow so difficult to switch gears. Here you know you’re going to have this big surgery and a hard recovery, but it’s for the ultimate cure. Then, you’re left with the big scar, hard recovery, and few choices that point to cure. When the refocus completes, you’ll feel more optimistic. Yes, the surgical cure was not in the cards for you, but they have other tricks in their dr. bags and hopefully you’ll chug on like the rest of us…

    #19488
    colleen
    Participant

    Lisa – Hang in there. My husbands tumor is also around the vena cava, but today we are marking one year, so all hope is not lost. Keep fighting. I will keep you in my thoughts. Colleen

    #19487
    candyz
    Participant

    Hi Lisa,
    my prayers are with you, I wish the news was better for you. Take care of yourself and focus on healing from surgery. Do you have help?

    Candy Z

    #19486
    mr-j
    Participant

    Lisa sorry to here that you are not doing well and my prayers are with you,have you had a second opinion.my first doctor didnt want to operate.I go for chest and other scans today I have been home for 3 weeks and still have discomfort and shortness of breath.I am sure my sister candyz prayers with you also

    #19485
    bbfranson
    Participant

    Lisa,

    Our prayers are with you. Hang in there.

    Brenda

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