a CA 125 question

I am fairly new to this site so it is possible this question may have been asked previously. In my own case the CA 125 starts to rise and CT or PET scans will demonstrate some reoccurrence. My gyn/onc claims they go hand in hand.

Is there anyone here who has had a normal CA 125 (in single digits or teens) but still had positive scans showing disease returning? ( but then too, if you were not symptomatic why would a scan be done with negative numbers, anyway?) I have read online that this is possible but have not know anyone who had low numbers and a positive scan.

Just wanted to throw this question out there.

Thanks for your response.

Carol-B

10 Replies

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  • Yes, Sandra had CA125 readings between 8 and 143 throughout her 5 yr journey but back in 2010 when admiited with infection just 8 weeks after her debulking surgery and a CA125 reading had crept up to 20, a scan was performed that confirmed recurrence and the need to start 2nd line treatment immediately....none of this wait and see approach...it shows you cannot plan your life just around CA readings, it is the scan that will determine if treatment is required or roll the dice and go to watch and wait. Xx paul

  • Thank you, Paul.

    Very valuable info. I appreciate your feedback.

  • My ca125 was 8 when I reccured and at it's highest was 13. A scan was performed at my GPs request as I had slight indigestion and a dull ache in my shoulder. I had seen my gynaecologist the week before who told me as my marker was low there was nothing to worry about so thank goodness my doctor was in the ball and asked for a scan to be done. I started second line chemo two weeks after the scan. X

  • Thank you for responding.

    May I inquire if you are currently in remission or treating? If treating what line chemo are you receiving?

    I appreciate your response.

    Carol-B

  • I have just nicely finished 3rd line Carbo/ gemcitabine and waiting to have my end of treatment scan. X

  • Wishing you the very best with your upcoming scan. Thanks for your response.

  • I was diagnosed with OC where the scan showed cyst on ovary but CA125 was 34. My hospital now use 30 as a benchmark rather than 35.

    LA

  • Thanks Lily-Anne. I have seen several different benchmarks depending on the facility performing the CA 125. I started at a place were anything over 20 was considered abnormal. Another was 30 and my current hospital is now 35. I never have felt very confident unless I am in single digits but as mentioned by Jeff and Ketchup above even in single digits there is no guarantee without a negative scan.

    We all just continue to march on.

    Thanks again.

  • Hi Carol I have had recurrence OC but my CA 125 was never above 35, I dont think my onc bothers with the test anymore, I have high grade 3 serous. Love BridIE

  • Thanks Birdie,

    I am also high grade 3 serous. I think I am one of those individuals who is quite sensitive to the CA 125. As soon as I get out of single digits and it increases by more than 7 points I am in trouble.

    I had originally posted the question as I have a friend who last yr. was diagnosed Stage 4 serous epithelial. Her CA 125 is 2 currently but she is symptomatic with left flank pain, digestive issues and occasional rectal bleed associated with pain. Her surgery was supra radical. Her gyn/onc has many explanations for why she hurts in these areas due to how her surgery was performed. She is not scheduled for a CT Scan till November. She and the onc keep on about the CA 125 only being 2.

    Without trying to frighten her I have asked what she thinks about having an earlier scan? Her response is vague. She is one of those individuals who does not wish to know much about the disease. She has never been on the internet or asked me any extensive questions regarding my own situation. I don't share information unless she asks.

    It just upsets me. I pray that all will be well with her but feel stuck regarding any other way to approach her.

    Thanks again for responding and for listening.

    Carol-B

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