Hi all
Following on from my last post when I reported my ca125 had gone up from 8 to 9. Just heard that 3 weeks later it's gone to 18. They are trying to calm me down by saying that it's my cough and urinary tract infection, for which I'm just starting antibiotics. I'm not buying it, I feel utterly defeated only 3 months out from finishing first line chemo, and 2 months after a clear scan. Has this happened to anyone else?
Thanks in advance, Marian x
Oh Marian 😕 Take a deep breath. We all know that it can be a bit of an unreliable marker and I have certainly faced the same panic as you!. Do you have a plan for a retest of it? Maybe once you are feeling better after finishing the antibiotics?
xxx
Thanks Vicki. I'm sorry, I've lost the plot this afternoon. I just can't help fearing the worst. In my nursing brain think it can go up with infection or inflammation but my fear is winning this evening xx
Remember all those lovely, calming things you told me, and my marker had sky-rocketed! Fear isn't always a bad thing - it's what keeps us safe. If you aren't happy with how things stand, ask for some more advice from your medical team. I'll be thinking lovely anti-inflammatory thoughts for you 😄 Vicki x
Hi Marian.
I finished chemo end of January with a CA125 reading of 16. It's steadily gone up since then. It was 54 about 6 weeks ago. I had a CT scan last week so am waiting the results.
My oncologist has said that there are a few of us ladies whose numbers are slowly rising. We are obviously panicking and so they've decided not to tell us our numbers now unless they are concerned. I was scanned for my reassurance rather than theirs. My oncologist said if it was up to him he'd not scan me at this point.
The CA125 is indictive only. It's a guide.
Please don't worry. I know we do but I've told myself that unless I know I need to worry then I won't.
Wishing you all the best. Xxx
Hi Suzanne, I understand why they are not telling you. It does cause such stress and worry, but I'm a control freak and insist on knowing. If I don't know I will wonder and feel just as stressed I think. Are they giving you any reasons for the slow rises?
Xx
Hi Marian.
No. They've not said what it might be. I can't think what it could be.
It is a worry but I'm trying not to.
I've missed two avastin treatments as the protein in my urine is too high.
Maybe that can give a rising CA125 reading although I asked my oncologist this and he said it wouldn't.
Just waiting for scan results.
Xxx
Will keep everything crossed for you Suzanne xxx
Thank you Marian. I will for you too. 🤞 Xxx
Xxxx
Hi Marian, I can understand your fears but please do believe what they're telling you, we all know that our CA125 can change due to infections, illnesses other than cancer and some medicines and your level is still well within the accepted 'normal' range. Ask for another test once you've finished your antibiotics and your cough has gone if possible. Take lots of care and feel better soon ❤️Xx Jane
Hi Jane. Thank you for your kind and reassuring post.
My Onc has just called this afternoon and said that if I'm going to stress like this then she will stop doing the ca125....... she also said that by being so stressed about it I'm "inviting the cancer back"!!!
My sister recurred after 4 months NED, I don't think my Onc can begin to imagine how that shapes my stress levels.
Just feeling so ashamed of myself, but can't seem to get a grip
Love Marian xx
Don't be ashamed, it's perfectly normal to be scared and given your family history your level of fear is more understandable but please try to believe what your team are telling you, they do know what they're doing. I think you could possibly benefit from a little counselling where you are able to discuss your fears? Your team can organise this for you. Be as well as you can be and take care ❤️Xx Jane
I fully understand why some oncologists insist that Ca125 testing causes anxiety in women and should only be used when signs and symptoms are back.That is how I was monitored during follow up even though I had an initial reading of 2025 .
I certainly was less worried and quite happy with examination only.
I never had a follow up scan either.
Perhaps it is because I had 100% confidence in my medical team.
This may sound blasé but this is how it was for me even though I was absolutely petrified at time of diagnosis.
Hope all goes well for you x
Thank you for your reassuring words. I would love to be able to do it your way, I just don't think I could stop wondering if it's ok. I know I should have more faith because I do have a wonderful medical team. I lost my sister to this 2 years ago and I think that is what drives so much of my anxiety and fear
Xx
I've been a bit unwell on and off for the last six months and my ca125 keeps creeping up (still only 22). I've just had a CT which says all is still fine. Hope this helps to reassure you.
Sandra x
Thank you Sandra, that is very reassuring. You are doing amazing, that's so good to hear
Xx
Marian, It's understandable how you can feel this way, however, lets look at all the things that could be throwing your numbers a bit higher. Your stress level has to be very high currently as You are fighting two infections, 1 alone would be enough to throw the numbers off but 2 infections, that's alot for the body to fight. For some of us our new Normal CA125 can take a while to settle down to where it needs to be. Your body has been through so much with out any kind of recovery period so it is quite possible that this reading was a fluke and once you have finished your antibotics things will settle-down. We are all wishing you a speedy recovery.
I know you are right, but I keep thinking that the infection theory is a smokescreen to keep me quiet. Just feeling so emotional at the moment, but I know that isn't helped by being "under the weather".
Hope you are doing good lately ?
When I finished chemo my CA125 was 5. It's gone up to 17/18 in the past year, but it's stable at that, which is what's important. The infection theory isn't a smokescreen-inflammation will raise the CA125 level. Try not to panic until you're better and can have it checked again.
Take care
Lou xxxx
Sadly I can relate. I finished first line chemo early May along with clean scan May 10. CA 125 has been increasing. Have also felt swelling in my lymph nodes in neck/behind ear and fear fluid is slowly beginning to build in my abdomen. Also starting to feel a little nauseous and cramping. ☹️ Today I meet meet with my onc to hear what new scans show. Hopefully your still in the clear. But as a wise nurse once told me- once you have a cancer diagnosis, best to check and rule things out formally. Hopefully that can happen for you.
Best, Anne
18 is still well within normal limits. I wish mine was 18! Please try. Not to panic. let the ABs do their work, get rid of the cough and leave it for a few weeks before having another test done. Ann x
Hi Marian,I too have had a rise in my CA125.Gone from 15 to 48.A CT has been booked for 15th of Aug.I was stage 1c grade 3diagnosed in 2015.Surgery to remove the buggers ,follwed by surgery to remove the Omentum.5 months of Carboplatin/Paclitaxol.
Now I have been having bowel problems too and this rise in bloods.
It is very scary,I thought I cracked it but the doubts are back.Speak to your GP for advice.I m going on holiday with my husband,kids and grandkids.I WILL have a good time and try to put this to one side til I return.Keep in touch,thinking of you,try not to stress (easily said I know)
Sharon age 57 but feels 37 on a good day!
Frightened
Low Platelets
Terrified of recurrence
Terrified 
Good news!
