Spot on Liver almost 9 Years Out

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So. I'll be 9 years out from my double mastectomies in January 2017. My alkaline phosphatase level was 133 at my last onc. appt. in June, which was 2 points more than the visit before. I freaked and asked if we could find out what was going on. Had a bone scan that came back clear, but my CT scan showed a spot of about 1 cm. on my liver. Doctor wanted to wait six months to see if it got any bigger, but I am so anxious that I asked for a PET scan, which I have scheduled for 11/18.

Anyone else go through something similar? If the PET scan shows something suspicious, could it still be benign? My husband is frustrated with me because I'm sure it's a metastasis, but he just doesn't get it. So I thought I'd talk about it here. :)

Comments

  • KBeee
    KBeee Member Posts: 5,109
    edited November 2016

    I am not too familiar with liver stuff. Sorry you have to wait so long. Vent here any time as you wait

  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    Thanks, KBeee, I appreciate the support

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Do you happen to take Nexium for your stomach? It raises your liver readings and I'm sure other drugs do too. You have to consider non alcoholic liver disease which is caused by illness and meds. I get why you jump to Mets but there really are a bunch of things that affect the liver. Two points is not a big jump. We are here for you.

  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    Actually, I've been taking Pepcid mostly, but have taken Nexium as well. Wonder if that did it? I didn't know that about that side effect..

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Years ago my liver readings got so high my doctor swore I must be drinking too much. I wasn't and we got in a big fight and he fired me. Sent me a letter saying he didn't want to be my PCP anymore! I phoned the makers of Nexium and they said Oh yah it does raise your liver readings. I pray that is your situation.

  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    Thanks! Sorry your doc fired you! Seems a bit harsh to assume someone's drinking without ruling out anything else!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    it was years ago and I dropped off paperwork proving my point so I got the last word in. Hehehehehe

  • KBeee
    KBeee Member Posts: 5,109
    edited November 2016

    My doc said he does not worry unless liver numbers are double the normal readings

  • kcat2013
    kcat2013 Member Posts: 391
    edited November 2016

    librarychick, Did you have any scans previously of the liver that this latest scan could be compared to? I have a couple of spots on my liver but they have been there since before diagnosis and have not changed. Mine are assumed to be benign. Each time I have a scan the radiologist notes them and compares them to prior imaging and notes that there is no change in them.


  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    That's good to know, KBeee. I was trying to find info. On what was considered "high" and couldn't really find anything

  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    Kcat2013-- I had scans before surgery nine years ago, and at least one follow up. And, strangely enough, I had one about three months before the "spot" one for a different issue. But that one didn't have contrast like the spot finder did, and was done by a different organization. I assume that scan missed it. Or, more frightening, it grew to 1cm in that three months..

  • stephincanada
    stephincanada Member Posts: 228
    edited November 2016

    Hi librarychick64,

    I had a CT scan that showed three spots on my liver (they were "hypodensities"). My M.O. followed it up with an ultrasound (sonogram), which is an easy test with no radiation. Perhaps that might be an option for you while you wait for your next CT scan? The spots turned out to be nothing--I understand it is very common to have spots on the liver.

    Best of luck,

    Stephanie

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Non-alcoholic Fatty Liver Disease is what I meant to type when I was on my phone last night. Also known as NAFLD. Our diets and consumption of medication (think chemo!) stress and damage our livers (and kidneys).

  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    Yes, my diet isn't the best, I'm embarrassed to admit

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Don't be embarrassed!! It's time consuming and expensive to eat properly.

  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    Thank you all for your wonderful words. As a lot of us have said, waiting is horrible. And I'm not good at it. :)

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