Possible recurrence CA-125 63 being dismissed as Crohns!

I completed standard treatment in November 2016. My CA-125 has been on the rise since Feb 17 and is currently 63. Recent CR has reported no cancer but crohns disease?

has anyone else had this ? I believe the scan to have been misread but it is my word against theirs!

How high have others CA-125 vaoeus got to before second line therapy was commenced?

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  • My CA125 was 13 at end of chemo

    14 at the end of chemo 6

    21 at first check up in Nov and I had abdomen pangs so a CT was arranged and another blood test

    It was 39 at 8th Dec but a clear CT scan so I was told watch and wait and possible colitis or something else

    So 3 CA125 rises but not really any symptoms, the trend of CA is monitored after treatment. My pangs could well have been linked to my bowels or they may have been early signs of Recurrence - I will never know.

    I went straight to my GP and was referred for a sigmoidoscopy op which I had on 5th Jan, if I was told it was intestinal then I wanted proof!

    Sigmoidoscopy was clear but I was told I had a very twisted intestines which may be causing the pangs

    HOWEVER I THEN had masses of symptoms - from about the 12th Jan onwards- chronic indigestion (!) , abdominal pressure, bloating (what?!) and felt awful., oral thrush, slight pins and needles too , plus couldn't tell if I needed to go to the toilet ( wee or pooh) PLUS I had no appetite and the most I could eat was half a piece of toast in a day.......

    I asked my GP for a repeat CA 125 which was taken on 25th Jan, it came back that day as 2292 (I was only 30 at diagnosis in March last year))

    To Aand E that evening, admitted and put on IV fluids.

    CT confirmed my recurrence, although no measurable tumour I had thickening of peritoneal wall, and lesser Omentum stranding, blood clots to both lungs, thickening around bowel and Ascites which was confirmed as malignant fluid through needle biopsy.

    They will generally NOT say a small rise is recurrence without symptoms. I was very worried when I finished front line treatment at the very end of July as I thought how will I rcognise it if it comes back, in reality it was clear but I chose not to see it- lots of symptoms, for me anyway.

    Treatment without symptoms is generally not recommend or taken forward - what tests can you have done to prove Crohn's disease?

    Find out and get a referral maybe?

    Take care

    Clare

  • HiI'm a nurse experienced in Infammatory Bowel Disease (which incorporates Crohns). I have most definitely seen rises in CA125 with these conditions, it's basically showing the inflammatory response. Have you ever had any signs of Crohns before? Of course anyone can be diagnosed with it at any time.

    If you really don't feel it's the case then you should definitely discuss this further with you CNS or Onc or both. The radiographer may need to reassess the scan to put your mind at rest?

    I do completely understand your fears..... croons isn't nice but much more preferable to a recurrence. I pray it's the former

    Marian xx

  • My level is 64 new test next week. I've been told it could be my hernia as scan clear. So although I understand how you feel I guess it's still good news so enjoy

    LA xx

  • It could be crohns and perhaps they would be slow to give you another scan as the drink can upset the tummy. If you are unhappy do ask for the mdt to have scan read again. It might raise eyebrows but you are worth a second look, Otherwise ask for mri

  • Thanks all - please keep posting how you progress - v interested to see how Lily Anne and I compare as time progresses

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