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CA 27.29 elevated

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I finished chemo for Stage 2 ER+ Her2- about 7 months ago, then 20 rounds of radiation, and been on anastrozole and Verzenio since then. CA 27.29 was 21 about a month after chemo but was tested this week (6 months later) and has risen to just out of normal range at 41. I know these tests are not reliable on their own but this seems like a big jump. I have a call in to discuss with my MO ASAP, but until then, just looking for ways to keep myself calm and not think the worst. Any advice or similar experiences would be appreciated. Thank you!

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  • kaynotrealname
    kaynotrealname Member Posts: 392
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    Do you know why you're doctor is testing for this? It's not considered a reliable marker for people in NED since many things can cause it to elevate. Not just cancer. It is used in a metastatic setting mostly. But since they have drawn it and it is elevated I would take comfort in knowing that elevation in and by itself can be caused by many things. I don't know what your doctor will recommend but it isn't super high and may just be related to healing still from chemo or radiation. Inflammation can cause it to rise also.

  • maude7646
    maude7646 Member Posts: 12
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    Kaynotrealname: Thank you so much for the reply. I'm not sure why it's being tested, but I will be finding out. I'm considered high-risk for recurrence with an Oncotype of 28. Maybe that's why?

  • kaynotrealname
    kaynotrealname Member Posts: 392
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    Still shouldn't be from what I've read. It's unreliable and just causes stress. Plus there is no such thing as catching stage 4 early. The medicine either works for it or doesn't. If you ever develop physical symptoms that'll be the time for testing. But not before. At any rate I'm at one of the top rated NCI hospitals and they don't test for it. I'm glad. They test for other things (metabolic panel mostly) but it's more just to make sure my body is still functioning normally and that I'm healthy. And I appreciate that since it makes my appointments less stressful.

  • maude7646
    maude7646 Member Posts: 12
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    I agree completely. Just happened to see the result in my portal. I've been through enough and don't need anything to trigger me like this! Going to try to focus on the fact the results are not reliable and that I feel great. I really appreciate you taking time to reply.

  • tmh0921
    tmh0921 Member Posts: 518
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    I asked my oncologist if she looks at tumor markers, and found out she does. She asked me if I wanted a copy of them, to which I emphatically replied No! I have enough anxiety without worrying about fluctuations in tumor markers that usually don’t mean anything. I did ask her what she looked for with them, and she said she looks for patterns. Fluctuations are normal, she looks for large jumps, or for continual increases over time that may warrant further investigation.

    My primary care did a CBC at my last visit and casually mentioned to me that my ALT ( a liver enzyme) was elevated. Of course, my brain started imagining liver Mets. I couldn’t get home quick enough to call my MO for her opinion. She assured me that these things fluctuate and are most often not cancer related and she’d check it at my next appt in August.

    The anxiety is real… hang in there.

    Tracy

  • kaynotrealname
    kaynotrealname Member Posts: 392
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    I only let my primary care doctor test for what my oncologist doesn't. As a result she mostly just watches my thyroid and cholesterol. It eliminates confusion for me.

  • maude7646
    maude7646 Member Posts: 12
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    Of course my MO is on vacation this week but I spoke with the other MO who is monitoring his caseload. They are not overly concerned. The said the same things about the test being unreliable and that they are looking for trends over time not a one-off result. They also said that the tumor marker result are always used within the context of scans, physical exam, symptoms, and other info, never alone. Exactly what kaynotrealname said above. I have my yearly mammogram next week (first since diagnosis so let's make it even more stressful!) so they said just go ahead with that and I'll meet with my MO the day after to discuss with him. So anxiety is lower, but still nervous, of course.

    I'm definitely going to ask him how often he runs this test. I have such mixed feelings about getting instant access to test results. I know it's a good thing that we can access our records and tests, but sometimes I think I'd be much better off not knowing until they tell me that there is something to worry about!

  • spookiesmom
    spookiesmom Member Posts: 8,176
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    I was stage 4 since 2019. My MO has always run the tumor markers. And they did fluctuate a little. I had my yearly PET scan late January, nothing lit up. Yay me, right? 3 months later, at routine labs, they had jumped, he called it concerning. Off for another PET in June. I lit up in 4 places, in my bones.

    So I’m extremely happy he runs and watches those numbers. A bit of bouncing around is ok, can have many causes, as mentioned above. I have no symptoms with this bone mess, would never had known. I found the lump the second time.

    Best wishes

  • kaynotrealname
    kaynotrealname Member Posts: 392
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    I get it completely, Maude. These instant results are a mixed bag especially for us anxious people. I can see where it works better for stage 4 patients, as do I see where tumor markers are useful for them. For us? Sometimes I'd just like to speak to my oncologist first and let them tell me what is concerning and what isn't instead of me jumping to conclusions which I am apt to do. After all, it's the name of the game with anxiety. Anyway glad he doesn't see a problem and remember that they're the expert. Not you. Not anyone on this site. Them. If they're not concerned you shouldn't be either.

    I also think it's okay if you want to suggest he not run the tests. Honestly they're just not suggested for early stage diagnoses. They cause way more trouble than they're worth.

  • maude7646
    maude7646 Member Posts: 12
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    Spookiesmom: That’s a good point. We need every tool available to know what’s going on so we can take action as soon as possible. I just need to learn to better manage my anxiety when something pops ups.

    Kaynotrealname: Exactly! I do so much better hearing results from the doctor because then I can immediately ask questions and know the next steps. I’m anxious by nature and any little possible problem on these tests sends me to such a dark place, to the point where I can’t eat, can’t sleep, and can’t focus on work. It’s happened a few times since diagnosis, all for things that turned out to be nothing as soon as I spoke to the doctor. Therapy helps, and I’m getting better at not jumping to the absolute worst case scenario, but the fewer triggers, the better! I’m going to think about how I want to manage these tests going forward. Thanks for the advice and your calming words.❤️

  • tlatmcc
    tlatmcc Member Posts: 4
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    Hi everyone! I wanted to share my wild experience with CA 27.29. My first blood test for it before surgery (double mastectomy. Right breast grade 2 Invasive Ductal Carcinoma (2 tumors 9mm and 4mm) and Left breast had Atypical Lobular Hyperplasia) CA 27.29 was 70.2. Then I had it tested again about a month after surgery (clear margins) and the score was 44.5. Then 2 months into chemotherapy (completed 4 rounds of Adriamycin/Cytoxan every 2 weeks) and the number was 72.3. My MO ordered a PET/CT scan that came back clear. Then I had the test done again a month later at it was 79.1. What the heck, right? My MO feels happy with the results of the PET/CT scan so we're moving forward not focusing on the wild CA 27.29 numbers. Needless to say, it very much freaked me out after that first elevated number, but after the scan and being reassured by my doc, I am going to go with embracing that this test is unreliable and I'm not going to worry about it - even if I remain curious as to what could be going on that is causing such elevated results??!! I saw somewhere that something as seemingly innocuous as a difficult or slow blood draw could cause strange results? I am a very difficult stick and often my blood draws are multiple stick situations. Could that be it? I don't know. Anyway, more information is better than less, and I understand why using this test could be helpful, but still, I wish there was a better explanation for when this particular test result is so whacky and incongruent with other findings. Sigh.

  • maude7646
    maude7646 Member Posts: 12
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    tlatmcc: Thanks for sharing your experience. I have read that it’s normal for numbers to fluctuate during chemo. It’s so frustrating and scary though , isn’t it? We want the info, but seeing those numbers just sends me into a tailspin of panic. Like kaynotrealname said above, I think we need to remember that we are not the experts. If our docs see the numbers and aren’t worried, we have to trust that. Not saying it’s easy though!!

  • maude7646
    maude7646 Member Posts: 12
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    Just wanted to update: My first ever post diagnosis mammogram came back normal! Such a huge relief. Had the appt with my MO regarding the elevated marker and he reassured me again that these tests are super sensitive to all sorts of other issues and that they are never used by themselves to make any treatment decisions. It is very normal for the numbers to jump around, even out of range. I knew all this from reading about it and from all the helpful info from others on this site, but still very reassuring to hear it from my own doc. Going forward, I’ve decided not to look at any blood work. If there is a problem, they will let me know. May not be so easy to ignore all those test results in my portal but am going to try. Hopefully it will help to remind myself that it is best for my mental health and that I need to trust my docs and let them handle it.

  • 2019whatayear
    2019whatayear Member Posts: 468
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    If I exercise before the ca 27/29 my number is higher It’s super sensitive so I would say not to worry with it being 41

    If it goes 41, 71, 91 that’s the sort of trend that would be concerning

    But if the next one is 41 or less no worries for sure

  • pekwd
    pekwd Member Posts: 1
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    My CA 27 29 markers are as follows: 266/245/154/108. Yes, I understand that it means the treatment is working. I feel normal. I keep asking, "why am I doing this treatment when I feel normal"?