Recurrence with low CA125?

[Demelzatheseagull]

Hi all

I was convinced that the dreaded OC had come back but my CA125 is 20 and stable.

I'm really confused because I've had bloating and cramps for a couple of weeks and it feels just like my first symptoms of Stage 4a ovarian cancer 2 years ago.

I've never had IBS so it feels unlikely to me that it's that. I've been on Niraparib for about 6 months and I know this can be one of the side effects but 6 months in??

Anyone ever been in a similar situation?

[Emcee71]

Hi Demelza

Sorry to hear you're feeling unwell.

I have had the same - bloating and pain - the last few weeks plus overwhelming exhaustion, on top of the base level I've had since surgery and chemo (I am 4 months post chemo). Calling the nurse about it she dropped in casually that I had been found to have diverticulitis when they did my post chemo scan. I had not been told this! She said it's possible they also saw it during surgery but didn't write it in the report and my surgery was last November!. She thinks it explains the bloating and pain. The pain is on the left side, which happens to be the 'bad side' (cancer in left ovary) so of course I had feared the worst. I don't know if this is helpful or not, but there may be other issues they found during surgery that you weren't informed about due to not wanting to stress you out or something. Hoping it's not what you fear xx

[DianaPrince_]

Ca125 is not a good marker in some people. If it was it could be used as an early diagnosis tool.

But if it has been for you in the past, it should still be now.

So the fact it's stable should be very reassuring.

In my experience on parps I had more side effects the longer I was on them. So this could just be new side effects.

[delia2]

Hi. PARP side effects can wax and wane, so it could be that. I am one of those people for whom CA125 is not a marker. Mine was 8 at diagnosis and 6 at my second recurrence. But if yours was elevated at diagnosis then probably it is accurate. I wouldn’t worry too much but if the symptoms continue you should have them checked out.

[DebMac1]

Hi - Sorry to hear you're not feeling great. I agree with the other comments. It could be side effects from niraparib, after-effects from surgery, or after-effects from the chemo drugs and, of course, recurrence is always in the mix. The treatment really damages our guts. I am really focussed on trying to get/keep mine working properly through what I eat and probiotics. It's worth trying to work out whether it is fear or instinct that has you worried. If the latter, can you request a CT scan to put your mind at rest?

[Bookclublover]

Hi, I’m S3C HGSOC. Primary debulking one year ago followed by 6 rounds of carbo/ taxol. I’m Brac and HRD negative, been on Niraparib for 7 months, similar to yourself. My CA125 was stable at around 10-12 until July this year, when I started having recurrence symptoms. My CA jumped to 15 and has been rising slowly, now 20. Last scan in July clear, while score is in the normal range there’s no deviation from the routine 6 month scan.

I agree with what others have said about parps. I had no side effects first 6 weeks, then recurrence type symptoms developed over several weeks, leaving me feeling quite ill and sure that it was back. These symptoms settled down but occasionally one or two will pop up for a few days before disappearing again. I have no clue if these symptoms are signs of a recurrence or Parp side effects, but if you look closely at listed Niraparib side effects, many are in fact also symptoms of OC.

I know many women who have relapsed with no noticeable symptoms but very high CA scores, so let’s hope that what we are experiencing are PARP related. 🤞🏼🙏🏻

[Doglover1410]

I had CA125 of 456 on diagnosis, various chemos and surgeries and they always got CA125 to 10-12.

Had my spleen removed in 2022 with 4 more chemos and again got 10-12, but oncologist said he’d do a scan a year after. CA125 was 10, no symptoms but he found some recurrence 😥 now on a trial and CA125 still hasn’t changed.

Not trying to scare you, but if you’re having symptoms keep pushing them. My CA125 was always an indicator but not this time apparently!! X