I have been having bowel issues, aching joints and been feeling really exhausted
He did some bloods and has just rang me with the results. My CA125 has gone up from 23 to 36. He tried to reassure me that it was still low and close to normal but I am really panicked. My oncologist appointment is next Wednesday. I am so scared that it's back.This the first time that I've had a rise in my CA125 since surgery
I finished front line chemo in April 2017. Has this happened to anyone else without the cancer being back? Should I ask for a scan next week? Sorry for going on a bit but I'm really scared.xxx
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Welshandproud
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Oh lovely, I so understand you being panicked, the upside is that you have your oncology appointment next week so can get to the bottom of this sooner rather than later and your doctor is right, the CA125 isn’t excessively high but that really doesn’t stop the worry does it?. I truly hope you just have a touch of flu, an infection or something similar that could be giving you all these symptoms and that is causing your CA125 to rise and is at the root of the aches and pains.
Let us know how you get on next week, big hugs and lots of love ❤️Xx Jane
Oh Sian, that CA125 doesn’t half give us some worries! It could be that an area of your bowel is a bit inflamed, or your joints, causing the numbers to rise? It’s good that you have your appointment next week. Whoever sees you will weigh it all up & go from there. Are you going to see a GI Cons sometime? Thinking about you. Hugs xoxo
Hi Linda thanks for that. I so hope that is the case but I am really scared that everything is kicking off again. I am seeing Mr G on Wednesday and the gastroenterology team on 15th November. Hopefully I will get some answers one way or another. Sending hugs back too xxx
You may have to push for a scan as they often want to just repeat bloods in six weeks or so which is a long worrying wait - given you’re seeing GI consultant later in month I’d say you’d like a scan before that so you all know what is going on - it’s hard to make informed decisions with half the info - it could be lots of things other than a recurrence so try not to worry too much. ( if only it were as easy to do as say and I could take own advice !) x
Thank you so much for your reply. Yes I will push for a scan. I don't think I can wait another 6 weeks when I'm this stressed out. I would like to have a clearer picture before I see the gi team. Hopefully I am worrying unnecessarily but it's so hard when you've been told that it will come back You see these rises are proof that it's back. Thank you so much for your encouragement xx
It is such a hard disease on the nerves as well as the body - I know they have to explain the realities of recurrence but it does have the effect of never allowing a moment’s respite from anxiety - hope you get your scan - I’d imagine that even if onc wonkt request one that GI will as they need to see what is going on with your intestines! X
Thank you. Yes I agree entirely. The effect on the nerves is hard to take. I keep wishing it was Wednesday already and then I feel guilty for wishing my time away. Thanks for your support.
My ca 125 went from 11 to 29 and I was having bowel issues. My team did a repeat in one month and it had dropped back to 22 and a month after back to 11. The consultant thought bowel inflammation. I had a ct as well all clear in that area x x
You poor thing! I know how you feel. I panic sometimes when there is nothing wrong. I can tell you that , most likely, your CA125 could have gone up as a result of you having inflamation or a touch of a bug. You have your appointment next week and you will see you are just fine. January of this year my CA went up from 11 to 22. Still in the normal range, however, my dr. is pretty aggressive and sent me for CATScan. Turns out that I had a 5 mm nodule right outside of my liver. too small for surgery. I had 6 chemos and now I am on a Parp inhibitor. CatScan clear. I'm not saying that this is what is going on with you, but, I just wanted to share that I finally have come to realize how lucky we all are that we are constantly being checked and if something pops up, they can go right after it.
Rest easy and you will see it's nothing. Good luck to you!
Thank you so much for your message Marisa. I'm sorry you had to go through all of that but glad that the scan picked it up. Yes we are so lucky to have these checks and that the NHS provides them for us
Unfortunately any changes to our bodies or CA125 sends us into a panic. I would try & take comfort that your numbers are relatively low (mine was 6100 last month but now halved since treatment started) Easier said than done I know, scans out do CA125 so your oncologist should order you one if they are concerned. Please try to remain positive just for your mental well being which we always overlook x
Thank you so much for that Scotty. I'm so glad that your ca125 has dropped by half. I feel that I may be making too much of this since my levels were once over 10 thousand but this is the first time they have risen and that scares me that things are kicking off again. Only 2 days to my appointment xx
This happened to me recently - my CA125 was 15 in July, and then 36 in September. I just waited for five weeks for repeat bloods to see if it had doubled again, but it had dropped back to 23 instead. The trouble with the CA125 is, its just an inflammatory marker, like the ESR - ESR is absolutely non specific, CA125 can rise with OC, but also will rise with other inflammatory processes in the body. My oncology team said its such an unreliable guide that they go more by symptoms; they wait and repeat blood tests in 4-6 weeks when it rises - what they're interested in is doubling each time, or the overall trend. So try not to worry too much, because as the others say, you've clearly had some inflammatory process which may be nothing to do with OC going on in your body, which may explain why it rose slightly.
Thank you so much for that. Your experience really gives me hope. I am so pleased that your ca125 came down again and 8 hope that mine will do the same xx
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Could there be another reason for this appointment?
Lump in pelvic area & elevated CA125 - but non urgent referral - should I be pushing this? 
Should i be happy now and leave it????
How often should CA125 be done?
Feeling down
