Fill Out Your Profile to share more about you. Learn more...

Raised CA 27.29 and Scared Out of my Mind

Options
Eruvolo2018
Eruvolo2018 Member Posts: 3
edited February 2022 in Not Diagnosed But Worried

Hi All,

I’m looking for some guidance in the interim. A little background first both my parents were diagnosed with cancer. My father suffered from pancreatic while my mother survived cervical cancer.

My BRCA results came back with 2 mutations of insignificant significance. It’s because of that result and both parents suffered from cancer, my GP likes to run bloods every so often, particularly TMs.

My most recent round found a slightly elevated CA 27.29 and she wants me to come back in and give some more blood.

I’m petrified. I keep thinking of parents journeys with cancer and I’m beyond scared that this could be the start of my own. I’m only 34 with a 7 month old. I can’t stop spiraling.

Would anyone here know why a non cancer patient’s level could be raised? Should I think that this is the start of something worse? Any advise from this amazing community would help!



Comments

  • minustwo
    minustwo Member Posts: 13,184
    Options

    I don't understand why the docs are testing your CA27-29 if you haven't had cancer? Just doesn't make sense.

    That said, many docs won't ever run cancer antigens since they are notoriously un-reliable. It's my understanding that the only thing docs look at for CA27-29 is a history of elevation over a a number of tests.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    Options

    Tumor markers are not reliable and can't be depended on. Even when people are known to have cancer, their tumor markers can be low or normal. My oncologist doesn't share them with me because she said they are too unreliable and stress people out unnecessarily. If there is a reason to suspect you have cancer they will do scans.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    Options

    Also keep in mind where you are. Everyone here has had cancer, so you're not going to find a bunch of comforting stories about people who had elevated tumor markers for other reasons. ❤️
  • beesie.is.out-of-office
    Options

    I've had breast cancer twice. 3 of my 4 grandparents died of cancer. Both my parents had cancer (prostate and breast). All my siblings have so far had 1 or 2 cancers. I have a genetic variant of unknown significance (not BRCA but another cancer gene). Over the many years of my 2 diagnoses, I've seen 4 Medical Oncologists. None has ever run tumor markers nor even suggested it.

    Why in the world is your GP running tumor markers on someone who doesn't even have cancer? It's irresponsible.


    "The CA 27.29 test is primarily used to monitor stage 4 metastatic breast cancer and less commonly to detect recurrence in people previously treated for early-stage breast cancer...

    ...numerous studies have shown that the test is far less sensitive than previously thought. It also is not always able to specifically differentiate breast cancer from other causes, including noncancerous causes...

    ...A 2017 article in the Journal of Oncological Sciences states that because its sensitivity is low and it can't always specify what it is detecting, it is a better tool for monitoring disease progression and detecting any metastases (areas the cancer has spread to). It should not be used for diagnosing breast cancer or screening for the disease.

    ...As of November 2007, the American Society of Clinical Oncologists (ASCO) has advised against the use of the tumor marker tests to monitor for recurrence in people with no signs or symptoms of breast cancer." https://www.verywellhealth.com/cancer-antigen-2729-430607


    As for having "slightly elevated CA 27.29", it could be a one time blip. Or it could be caused by something as benign and common as a breast cyst or ovarian cyst.

  • 2019whatayear
    2019whatayear Member Posts: 468
    Options

    I’m with Bessie it’s bonkers to have TM tested.

    What even exactly is slightly elevate

  • edwards750
    edwards750 Member Posts: 1,568
    Options

    I’m confused too. I thought TMs were ordered by oncologists and for people who have cancer. I get you have a family history - so do I but I had BC. My MO never ran tumor marker tests because she said there were too many false positives plus I had early stage BC(Stage 1b) so she didn’t see the need. In the years before I was DX(2011) not once did any of my doctors ordered those tests despite my family history.

    All of us completely understand your anxiety but I we all also believe those tests are unnecessary for someone who dies t have cancer.

    Kept the faith and keep us posted.

    Diane


  • edwards750
    edwards750 Member Posts: 1,568
    Options

    I’m confused too. I thought TMs were ordered by oncologists and for people who have cancer. I get you have a family history - so do I but I had BC. My MO never ran tumor marker tests because she said there were too many false positives plus I had early stage BC(Stage 1b) so she didn’t see the need. In the years before I was DX(2011) not once did any of my doctors ordered those tests despite my family history.

    All of us completely understand your anxiety but I we all also believe those tests are unnecessary for someone who dies t have cancer.

    Kept the faith and keep us posted.

    Diane


  • Eruvolo2018
    Eruvolo2018 Member Posts: 3
    Options

    Firstly,

    I’d like to thank everyone for their honest replies. I appreciate it thoroughly.

    I’m not sure why my GP monitors me with these markers but I never questioned it really, because he’s the doctor.

    Also, I’ve learned more from your posts about what these markers actually are and are used for then any conversation with him. That level of ignorance is on me; I should have pried more.

    Watching my father deteriorate before my eyes and my mothers continuous battle, I can’t help but be pessimistic about my own fate. I’ve been anxiety ridden my whole life and when he called with these results, asking me to come back in for more blood work and ultrasounds, I panicked.

    I truly respect all of your journeys with your own health and never meant to bombard the board with something less significant. I just genuinely had no idea about any of this stuff.


    Again.. thank you so much for all of your responses

  • beesie.is.out-of-office
    Options

    Eruvolo,

    You didn't "bombard the board with something less significant". You asked a legitimate question.

    My comments and I'm sure the comments of others, when we've mentioned own diagnoses and our family histories of cancer, were not to suggest that your concerns aren't valid. The comments were made to explain that tumor markers are not standard practice, even for people with lots of family history of cancer and even for most of us with early stage breast cancer. Our point was that your doctor's rationale for doing this test on you is invalid. That was, for me, the sole purpose of my comments about my family cancer history.

    Cancer is very common, and your family history is not unusual. But just because your parents each had cancer doesn't mean that you will too. Most cancers are not genetic. With your family history, it is important to be vigilant and to get the appropriate screenings. But don't live in fear. Yes, you might get cancer one day. But there are dozens of "might happens" that we live with every day. That is the nature of life.

    CA 27.29 is absolutely not an appropriate screening for someone who has never had cancer. At this point, since you've had the test done, I suppose you need to follow it through. But speak to your doctor about, and if necessary, change doctors. This guy isn't doing you any favors by subjecting you to unnecessary tests and unnecessary worry.

  • alicebastable
    alicebastable Member Posts: 1,946
    Options

    Both my parents had types of cancers that I've had, along with an aunt and grandmother. When I had genetic testing, it showed no connection between their cancers and mine. "Mutations of insignificant significance" hmm, sounds like your doctor missed that word INSIGNIFICANT.

    I think your doctor is playing way above his level of expertise. Personally, I'd fire him or report him (or both), but you can at least tell him to stop running tests that there is no medical need for. Remember, he's working for you.

  • Eruvolo2018
    Eruvolo2018 Member Posts: 3
    Options

    Again I want to thank everyone for their thoughtful replies. I genuinely had no idea that this was so out of the norm!!! The way my doctor spoke about these things made it all sound so routine based on my history.

    As I said before, I’ve learned more from your educated responses then I have from my “medical expert”. I think some on you are right and this dude is definitely taking advantage of my anxieties.

    I going to take your advise and look for another GP….

    Thanks again.

  • princessfluffybritches
    Options

    In the past few months I have had PET scans with no changes, but my tumor markers were rising. What I've read so far is that PET scans can miss some cancerous growth. Most notorious is Lobular MBC. Between CA antigens rising and some investigating, I did have new areas of growth- Colon, stomach and ascites fluid- I hope that's it. So I can say for me that these tumor markers are important , for me they can be an alert system.

    Right now I'm pretty scared. I was started on chemo (Taxol) and my CA 125 made a drastic downward on the graph, my CA 12-3 is lowering, but my CA 27.29 has quickly been rising. I would love to know why, I'll ask.