• 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

      PS. I'm new to this ..I only got diagnosed in september. Found out I had a lage tumor after going to the E.R. becase of bad stomach pain. It was on my birthday night...

      over 2 years ago
    • carm's Avatar
      carm (Best Answer!)

      @Ironmickey,
      Hello, I'm an oncology nurse and first and foremost take a deep breath and don't let fear rule you. Many cancers metastasize to the liver and often spots are found on scans but the cancer is usually on the outside of the liver and not in it. A strong chemo can clear that up. If you are saying that you have another primary like liver cancer then that is different, but there are a lot of options available. Ask your doctor if the liver cancer is a metastasis or another primary. Ask the doctor if you are a candidate for Y-90 radioembolization for the liver if it is inside the liver. There are some recent new treatments for GIST. The most common therapies are Gleevac, Stivarga, and Sutent...all three are oral medications. I would ask the doctor what grade the tumor is so that you know how aggressive it is or if it is a slow grower. I would also suggest you get a second opinion... It just makes common sense. I am always here should you need anything or have any questions. Best of luck to you and remember that this disease is just biology... Never give it any more power other than that and never let it get power over you. Stay strong and in control and you will do fine.

      over 2 years ago
    • GregP_WN's Avatar
      GregP_WN

      All of us wish you the best Mikey, keep us posted.

      over 2 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Here are my 2 cents ...

      No one knows when you will take your final breath. I was supposed to live about 4 months when i was diagnosed and that was 6 years ago.

      My healthy, 43 year old son, on the other hand, was alive one minute and dead the next. No one had any clue he was about to die.

      Live your life. Tell everyone you love them. Mend fences. Take care of loose ends. No one knows when your last breath or mine will be. Live like it might be tomorrow.

      over 2 years ago
    • JaneA's Avatar
      JaneA

      In addition to the excellent advice that Carm provided, it is simply amazing what liver surgeons can do now. There is a website specifically for patients in your situation.

      https://www.beatlivertumors.org/

      Take some deep breaths and write down the questions that Carm suggested. A spread to the liver is not a death sentence - one of my friends had his rectal cancer spread to his liver. A surgeon removed 60% of his liver and they did mop-up chemo afterward. That was 4 years ago, and he's still NED (No evidence of Disease). The liver regenerates itself in 6-8 weeks. There is HOPE.

      over 2 years ago
    • carm's Avatar
      carm

      @JaneA is correct. You can live with only 5% of your liver so ponder that thought...you have miles to go!

      over 2 years ago
    • Schatzi1962's Avatar
      Schatzi1962

      I'm clueless when it comes to this myself, maybe someone can answer my question my mom who is 73 has a tumor in her stomach which measures about 5 cm, her liver has also been affected she has 4 growths there the largest was 2.7cm when she was diagnosed they told her she had 4 months without treatment and 11 months with treatment. How can this be, she is walking around like you and me the only difference is she has a hard time with eating. They also told her it is not operable? She is doing Chemo every other week, which is what Sloan Kettering and Cancer Treatment Centers of America agreed with her local doctor.

      over 2 years ago
    • carm's Avatar
      carm

      @Shatzki1962,
      Hello, I'm an oncology nurse and in order to answer you more information is needed. What is her diagnosis, is it stomach cancer? What therapy are they suggesting? I can tell you that most abdominal cancers can cause obstructions as the mass increases. Generally a person can go 6 weeks without food and 2 weeks without water. There are some emerging new therapies out there and MSKCC is an excellent place... I wouldn't go to CTCA. I wish you the best of luck.

      over 2 years ago
    • Schatzi1962's Avatar
      Schatzi1962

      Her diagnosis stomach cancer first line treatment is chemo both places we went to agreed with that.

      over 2 years ago
    • carm's Avatar
      carm

      I'll assume then that if they are suggesting first line that it might be 5-FU, or Cisplatin or FLOX. I would only be guessing because I have not seen the pathology but it sounds like it is a high grade. I would also ask if she is a candidate for an immunotherapy. Best of luck to you both.

      over 2 years ago
    • Schatzi1962's Avatar
      Schatzi1962

      Yes Flox, and we asked about immunotherapy but she has RA and Lupus so she isn’t a candidate for that.

      over 2 years ago
    • carm's Avatar
      carm

      @Schatzi1962,
      If the immunotherapies are off the table then ask the oncologist if she is a candidate for the biologic, Avastin. It has been used with gastric cancers and has shown promise in phase three and open label trials.

      over 2 years ago
    • Molly72's Avatar
      Molly72

      I had a small, but high grade GIST several years ago, it was treated only by surgery, so far it has not returned or spread.
      No chemo or immunotherapy was used.

      over 2 years ago
    • Schatzi1962's Avatar
      Schatzi1962

      Thank you...I will.

      over 2 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      IronMikey, I've taken Gleevec for GIST since 2013, and I've considered it a miracle drug. If you have nausea or other side effects, call your doctor's office for a prescription to help. Make a list of your questions to ask at your appointment, and try to take a friend or family to help you remember what the doctor says.

      Don't panic. I hope your pain has improved since your diagnosis, which I think would mean your tumor is shrinking. My doctor told me the pain is from the tumor pressing on something.

      You can call or visit the American Cancer Society for information, including about financial help for co-pays and medicine. They mailed me a list of resources, so you can handle things like that while you wait on your doctor's appointment. Usually you have a CT scan before each appointment to see if the tumors shrank since you started your Gleevec. Best wishes!

      over 2 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      IronMikey,
      Please update us when you find out more. As you know, GIST is very rare and there are very few people on WhatNext who have it. It's treated entirely different from the most common cancer of the stomach, which is adenocarcinoma.

      Don't panic. Just do what the doctor says. Mine spread to outside my liver also.

      over 2 years ago
    • ironmikey's Avatar
      ironmikey

      I want to thank everyone for their responses... It's helped calm me a bit. Tomorrow I have an appointment at Fox Chase Cancer center for a second opinion. I'll post the outcome soon. Thanks again everyone!

      over 2 years ago
    • ironmikey's Avatar
      ironmikey

      I had my appointment at fox chase cancer center in philadelphia today for a second opinion. I hoped to hear that my treatment with gleevec was a good course of action but unfortunately that wasn't the case. The doctor who specializes in soft tissue cancer said that after reviewing my radiology reports and images that my tumor has characteristics of one that might not respond to Glevec.. she ordered molecular imaging,a new C.T. scan and blood labs before my next appointment. I feel like all the time since I;ve been diagnosed in september has been wasted. She said that the average survival is 5 years but she has patients that have gist tumor that metastisized to liver that are still around 20 years later so I guess I just have to take itr day by day like she said

      over 2 years ago
    • ironmikey's Avatar
      ironmikey

      By the way she said that it appears to be inside the liver not outside. She says that about 98% of my liver is healthy though so there are treatment options

      over 2 years ago
    • ironmikey's Avatar
      ironmikey

      This all happened so fast. It's hard for me to process....

      over 2 years ago
    • Schatzi1962's Avatar
      Schatzi1962

      That is really good news for you, about the tumor being outside the liver not the inside. But I know how you feel about it all happens so fast, it always takes a little time to process....day by day is all you can do.

      over 2 years ago
    • ironmikey's Avatar
      ironmikey

      Its inside the liver not outside. Did i miss type?

      over 2 years ago
    • ironmikey's Avatar
      ironmikey

      No you must have read wrong. I guess being inside is bad news??? Just my luck. I have no good luck ever since my diagnosis. Inoperable, Spread to liver, Not responding to Gleevec..... What next???

      over 2 years ago
    • ironmikey's Avatar
      ironmikey

      Barbarain bahm, your right about scan before each visit. the new doctor wondered why my other "old" doctor hasn't taken a new scan yet!

      over 2 years ago
    • 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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