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Tumor Markers Crazy

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meme5
meme5 Member Posts: 43
edited August 2022 in Waiting for Test Results

Does anyone know how reliable tumor marker tests are?

I am a nine year survivor and my oncologists is having me get a endoscopic ultrasound so they can take samples of some swollen lymph nodes near my liver for a biopsy. Today they did blood work for tumor markers and two results CEA and AFP tumor markers came back normal but the CA 19-9 came back 60 (normal is under 35) and the CA125 came back 42 (normal is under 35).

I have read that tumor markers can be unreliable. Is that true or not? Also don’t understand how to tests came back normal and two didn’t. This is driving me crazy with not knowing what I should rely on.

Any one else have tumor marker issues

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
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    meme5,

    My understanding is that it varies by individual. As a result of this there are many oncologists who never use tumor markers. I am de novo stage IV for 11 years and have never had tumor markers done. I believe none of the docs at my medical center’s oncology department use tumor markers. That being said, I know we have quite a few members for whom they’re reliable and I hope they will chime in soon. Take care

  • kbl
    kbl Member Posts: 2,775
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    meme5, it is true that tumor markers are unreliable for some, but they do work for me. I have de novo lobular Stage IV. My tumor markers in 2016 were all high, but due to a missed diagnosis, I had bone and bone marrow only spread to my stomach. At that time, my CA 27-29 was 490. After almost three years on two different treatments, that tumor marker is at 116. I still have extensive mets in my bone and bone marrow, but it's helped the mets in my stomach. I only had the 19-9 tested once. They use theCEA, CA 27-29, and CA 15-3 for me. I also asked for a CA125 back about six months ago. It ended up being over 1400. I didn’t do anything about it because it could be from the cancer I already have. I may ask for another one soon.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    And I am one of those with mixed results. For the first five years my TMs were only slightly elevated despite a significant pleural effusion and extensive bone mets. My MO continued to check periodically but we didn't see much beyond some minor elevation. However, after it spread to my liver and then progressed over eight months due to a couple of failed chemos, my TMs (15-3) took a leap. Not the huge numbers that some people get but up to 172 which seems to be pretty high for me. Now on Xeloda the numbers have dropped steadily. Still not down to where I was prior to liver mets but moving in the right direction.

    So, they can be completely useless, they can be Uber responsive or they can be slow to respond but still tell part of the story. Ultimately my MO does not rely on them but treats them as another source of information to potentially help us to plan my treatment.

    Edited to add: I will say that seems like a lot of markers and I’m surprised that your MO is not checking 15-3 which is pretty much the standard for BC. You need to be careful interpreting the others as I don’t believe they are very specific to our disease which is probably why you are seeing conflicting results. I would have a chat with your oncologist to understand why they are choosing these markers and what information they glean from this.

  • meme5
    meme5 Member Posts: 43
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    Thank you for this information. I live in a small area in South Georgia where my oncologist is at our cancer center here. But after a pet scan revealed an SUV uptake of 7.2 on some lymph nodes near my liver he sent me for a consult at Univ of Florida Shane’s in Jax,Fl. They are the ones who ordered the tumor marker test. My oncologist at home in Brunswick, Ga has never done tumor markers because he says their unreliable so he does bloodwork instead. I am going to have an endoscopy ultrasound so they can get a tissue sample of the lymph nodes in question. They are concerned that it may be lymphoma.

    But I was thrown for a loop yesterday when I saw the two tumor marker results (ordered by a PA by the way) and they were elevated. This anxiety is aweful and takes me back nine years ago when I was first diagnosed with BC.

    Thank you and the others for your impute

    Hugs and holding on to hope

  • kbl
    kbl Member Posts: 2,775
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    meme5, can I ask if you have lobular or ductal?

  • meme5
    meme5 Member Posts: 43
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    I had lobular cancer stage 2B, with 3 lymph nodes involved. I had double mastectomy, reconstruction with silicone implants, 8 rounds of chemo ( 4 of adromyicin cytoxin and 4 rounds of taxotier) and did 5 years of Famara. Have been great for over nine years until these inflammation in lymph nodes appeared on a CT scan because I went back o the ER for a stomach bug which turned out to be an inflamed colon. Took flagyl/ Cipro and that cleared up completely.

  • kbl
    kbl Member Posts: 2,775
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    meme5, thank you for letting me know. I also have lobular. When they did my endoscopy, the gastro said my stomach looked normal except for gastritis, but he took five samples anyway. I’m so grateful to him for doing that. It was found in my stomach. Please keep us posted on how everything goes.

  • meme5
    meme5 Member Posts: 43
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    Yesterday I had my upper endoscopy with ultrasound where they took tissue samples of the lymph node in question. It was done at Shands in Jax, Fl a large teaching hospital. I did not have any complications. The Dr who did the procedure told me there is a 40mm mass sitting all by itself that he biopsied. It is contained and not attached to any other organ and all major organs are appearing normal. But in his report stated that it is suspicious of adenocarcinoma from breast cancer. They will call me with biopsy results hopefully by Friday.

    I was taken aback by his report. I don’t know what they do with an enclosed lymph node in the hepa porta area ( kinda by the liver but not in it) that is malignant? He says it is just tucked away all by itself and not attached to any other organ. It is both solid and fluid filled.

    What is the treatment for something like this? Surgery, chemo, radiation? I have a follow up with surgeons office and then my oncologists the 1st and 7th of Sept. waiting is agonizing.

    Does anyone have any insight? Is it possible to have a mass that is not malignant? I don’t know where to turn except sit and wait.