• gist cancer spread to liver

    Asked by ironmikey on Friday, November 9, 2018

    gist cancer spread to liver

    My G.I.S.T. cancer tumor was already spread to my liver when diagnosed. I've read today there is no cure for secondary liver cancer and I'm scared... My doctor never mentioned my chances of anything but I'm going to ask him to tell me the best and worse case scenario. I feel like he doesnt say anything untill I come out and ask! Does any one have suggestions on what I should say to him? I'm really concerned/scared... I want to call for a consultation a.s.a.p. even though my next appointment isn't until 11\27/. I just don't know what to do... I'd appreciate any input or suggestions from someone with first hand experiance or just any one who might know something... Thanks

    27 Answers from the Community

    27 answers
    • ironmikey's Avatar
      ironmikey

      I guess that unless I'm in a freak accident this is what will cause my death. I only hope I can mantain a fairly healthy life for as long as possible

      over 2 years ago
    • Schatzi1962's Avatar
      Schatzi1962

      Sorry i did read wrong

      over 2 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Don't worry about "processing." Just focus every day on doing what you need to do for treatment, and that'll get you through.

      I think it's great she said you have several options for treatment of your liver and that it's only affected 2% of your liver. Did you have the second CT scan yet, or are you waiting for the results? Are they going to do surgery on the primary tumor in your stomach?

      I hope you will still go to your appointment on 11/27/18, and ask questions to compare the two doctor's opinions. You should ask your doctors about whether you are eligible for immunotherapy and/or a clinical trial, which can give you access to medicine not available to the public. You might consider a third doctor's opinion to tell you which doctor's opinion is right. We usually recommend a National Cancer Institute (NCI of the NIH) -associated Comprehensive Cancer Center. Here's a link of a list of them by state, and there are several in the Philadelphia area. https://www.cancer.gov/research/nci-role/cancer-centers/find#Pennsylvania

      Please continue to update us. It would probably help your feelings to find a support group by asking the doctors and their social workers if there is one. The American Cancer Society is great for giving you information, too.

      If you want another website support group and lots of facts, there is liferaftgroup.org. I just located their list of GIST specialists by state, so here's that link: https://liferaftgroup.org/gist-specialists/ They also have a list of clinical trials available.

      Because GIST is rare, I've read you should go to a large medical center to an oncologist who's treated it before. Best wishes.

      over 2 years ago

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