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CA 27.29 of 117. I'm worried about recurrence now

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quiltrunner
quiltrunner Member Posts: 13

My tumor markers have always been in the 20's. Suddenly 117. My annual appointment for Nov 5 just got bumped up to this Thursday. Any information is welcome?


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  • minustwo
    minustwo Member Posts: 13,078
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    Quiltrunner - sorry, mine have run from 25-35 for the last 7 years. I have been told that many docs won't even do this test since the results have too large a margin for error. Hope everything is OK.

  • wallycat
    wallycat Member Posts: 1,245
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    My current onco has never run a tumor marker.


  • 2019whatayear
    2019whatayear Member Posts: 464
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    I hope everything goes well today. I suppose they may want to retest in a month or send you for a scan.

  • spookiesmom
    spookiesmom Member Posts: 8,168
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    My MO does run them , but says they aren’t always reliable. Early this year, there was a jump of about 30 points. I freaked. BUT my DH died the week it was drawn. Next lab was back to my normal. And has been since.

    So has something changed for you that could cause it?

  • minustwo
    minustwo Member Posts: 13,078
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    QuiltRunner - how did the appointment go? Hope everything is OK.

  • quiltrunner
    quiltrunner Member Posts: 13
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    I’m scheduled for a brain MRI Tuesday and PET scan on 11/15 unless they can find a spot to get me in sooner. She didn’t think retesting was needed. Obviously I’m not feeling very confident that there isn’t a recurrence but I’m surprisingly calm.

    Thanks for asking.

  • minustwo
    minustwo Member Posts: 13,078
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    Fingers crossed Quilt Runner.

  • edwards750
    edwards750 Member Posts: 1,568
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    My oncologist never ran those tests either because of too many false positives. My BC DX in 2011 was IDC, Grade 1, Stage 1b. This past August it was 10 years since I was DX. I am so blessed and grateful.

    I did have a friend who experienced the same jump in numbers as you. Her MO told her he would retest in 2 weeks since so many things can affect the increased score. I’m sure you are nervous. Everything to do with BC makes us all the same way. I guess we will always be looking over our shoulders because we been branded with this insidious disease.

    Keep the faith and keep us posted.

    Diane


  • 2019whatayear
    2019whatayear Member Posts: 464
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    It good that your doctor is running the tests but since you can't get in until 11/15, it kinda stinks you can't get test rerun in the meantime, to see if it is still high or not.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Hi, quiltrunner. How often do you have the tumor marker checked? I'd say several in a row rising over a few months is more concerning than one higher reading. That is not a super-high CA 27.29 number in my opinion. That said, I don't want you to feel discounted, and I think a PET-CT is appropriate and the way to get out of the difficult place of not knowing if something is up or not. For some people TMs are accurate, and for some they are not. Be aware that in some cases, only in some, ILC is not very FDG-avid and does not show up on PET. So if the scan is clear, I would have those TMs monitored for a few more months or request a different type of scan. There is more info about ILC scanning at lobularbreastcancer.org. As far as the brain scan, brain mets are not so common with ILC, so hang onto that. Please update us here when you get scan results. It sounds like your onc is on top of things.

  • quiltrunner
    quiltrunner Member Posts: 13
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    Thanks all for your input. I'm not concerned about the brain MRI and I too think it's likely a huge waste of time and money. I may call tomorrow and see if I can insist on being retested and then if it's still elevated schedule the PET. I'm hating this waiting! Of course now I'm concerned the PET isnot reliable testing for ILC. UGHHHHH

  • pessa
    pessa Member Posts: 137
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    My MO was getting tumor markers twice a year. They went up significantly (don't remember which ones) after 3 years and I ended up with a new primary cancer in my lung, which I am dealing with now, but which is under control. No recurrence of the breast cancer..................

  • quiltrunner
    quiltrunner Member Posts: 13
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    Insurance is denying the PET and requiring a CT first. Is that going to be any more reliable?

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Each person/cancer is unique. I believe PET-CT is often more helpful than CT + bone scan, especially since it shows active vs. dormant cancer. And Dr. Ulaner, an expert in imaging ILC, says every ILC deserves a chance to be FDG-avid (seen on PET). That said, I would be ok with CT for a first scan to rule out mets. Insurance prefers CT because it is cheaper. You can advocate for a PET next if it seems advisable. Edited to add that I remember now that Dr. Ulaner said that if a patient's ILC is not FDG avid, then the radiologist should scrutinize the CT. Please read this article by Dr. Ulaner, an expert in imaging ILC. He discusses the standard modalities as well as the new FES PET.

    https://lobularbreastcancer.org/lbca-scientific-blog/

    (FYI for me all imaging modalities (FDG PET, CT, MRI) have shown the liver mets, though my tumor markers give the first warning of progression before the scan shows it. And no imaging has ever seen the presumed mets in the bile duct area.)

  • LindaSueH
    LindaSueH Member Posts: 14
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    My CA 27-29 is 733. I was happy because it finally went down from 956.


  • quiltrunner
    quiltrunner Member Posts: 13
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    it’s officially Stage IV. Biggest issue to hit first is radiating the tumor pressing against the superior vena cava. This time tumor markers were the big alert. Terrified of course.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Oh no, quiltrunner. Damn. We are here for you. If you are up to talking, where did they find mets? Do you have a treatment plan yet? Are you coping ok?