Should I be this panicked?

[Welshandproud]

I had a go appointment this week

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

[Cropcrop]

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

[Welshandproud in reply to Cropcrop]

Thank you so much for your lovely supportive message. Yes I'm pleased that my appointment with the oncologist is next week

Hopefully he will send me for a scan to see if anything is going on. I just need to know one way or the other. The not knowing is so hard

Big hugs back to you too xx

[Seasun36-uk]

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

[Welshandproud in reply to Seasun36-uk]

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

[Seasun36-uk in reply to Welshandproud]

I know - you can’t help but worry. I agree with Coldethyl - a scan would give info to help Mr G & GI Cons. Much love xoxo

[Coldethyl]

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

[Welshandproud in reply to Coldethyl]

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

[Coldethyl in reply to Welshandproud]

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

[Welshandproud in reply to Coldethyl]

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.

[Eriksendi]

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

[Welshandproud in reply to Eriksendi]

Thank you. That makes me feel so much better. I really hope that it will be the same for me and that I'm worrying unnecessarily xxxx

[Welshandproud in reply to Eriksendi]

That has really given me hope. Thank you so much xx

[govanhill]

I had some inflammation in my lungs which was due to a trial drug. My ca 125 went up to 34. It then went back to 22 after stopping treatment

[Welshandproud in reply to govanhill]

I'm so glad it went back down for you when you stopped the drug. Fingers crossed mine will go down too x

[Mptelesca]

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!

Marisa

[Welshandproud in reply to Mptelesca]

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

[Hidden]

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

[Welshandproud in reply to Hidden]

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

[bamboo89]

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.

[Welshandproud]

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