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Women's health

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Elevated CA125

20 replies

NLMUM80 · 30/05/2023 18:59

Routine blood tests (I'm not in the UK, have these quite often with private health insurance) threw up a high CA125 marker - I don't have any symptoms. Dr. re-tested, and again came out at circa 70 to 80.
going in for MRI and CT scans as a precaution....Pretty terrified but wondering how likely inflammation / endometriosis might be....?

OP posts:
NLMUM80 · 30/05/2023 19:03

Sorry I should have mentioned - an ultrasound of the ovaries was done between the blood tests, and all looked fine

OP posts:
RightWhereYouLeftMe · 30/05/2023 19:06

I had this about 10 years ago along with some symptoms (pelvic/abdominal pain, bloating etc) and I had some scans and nothing was found. I think I read at the time that levels can be high for no real reason, it doesn't always point to a problem necessarily.

worldwidetravel2017 · 27/06/2023 20:06

How did you get on NLMUM80 ?

My raised ca125 isnt far off yours

JS135 · 16/08/2023 15:36

NLMUM80 · 30/05/2023 18:59

Routine blood tests (I'm not in the UK, have these quite often with private health insurance) threw up a high CA125 marker - I don't have any symptoms. Dr. re-tested, and again came out at circa 70 to 80.
going in for MRI and CT scans as a precaution....Pretty terrified but wondering how likely inflammation / endometriosis might be....?

Hi!
i hope you are doing ok, I’m just wondering if you have had any further tests, I’m also going through similar with raised levels but clear ultrasound.

worldwidetravel2017 · 16/08/2023 15:51

JS135 · 16/08/2023 15:36

Hi!
i hope you are doing ok, I’m just wondering if you have had any further tests, I’m also going through similar with raised levels but clear ultrasound.

Whats your ca125 number?
Could you have endometriosis? Or pcos ?

JS135 · 16/08/2023 16:26

Currently 51. No PCOS or endometriosis seen on ultrasounds. Only very tiny fibroid

worldwidetravel2017 · 16/08/2023 18:52

JS135 · 16/08/2023 16:26

Currently 51. No PCOS or endometriosis seen on ultrasounds. Only very tiny fibroid

Sometimes endo only shows with a procedure that starts with an L...
A friend of mine had it and it was found that way

My ca125 is currently 50 something and i have a small fibroid
But that alone - isn't really enough 4 the raise..
I think theres something else

They are guna investigate further

Ramsd · 16/08/2023 18:55

I had this back in March, mine was over 90. Had ultrasound and an MRI but got the all clear for anything sinister, they suspect endometriosis which I’m now trying to manage.
It was really scary at the time, but it does seem CA125 can be raised for a variety of reasons.

JS135 · 16/08/2023 19:18

Hi!
I hope you are doing ok and I’m glad to hear your mri came back normal. I had a CT recently that didn’t show anything concerning. I wonder why I wasn’t referred for mri instead.

did any of your scans show any signs of endometriosis like endometrioma cysts?

JS135 · 16/08/2023 19:19

Ramsd · 16/08/2023 18:55

I had this back in March, mine was over 90. Had ultrasound and an MRI but got the all clear for anything sinister, they suspect endometriosis which I’m now trying to manage.
It was really scary at the time, but it does seem CA125 can be raised for a variety of reasons.

Hi!
I hope you are doing ok and I’m glad to hear your mri came back normal. I had a CT recently that didn’t show anything concerning. I wonder why I wasn’t referred for mri instead.

did any of your scans show any signs of endometriosis like endometrioma cysts?

NLMUM80 · 17/08/2023 04:53

Hello! Sorry also not to have updated - there was so much going on, it was all rather stressful! My bloods back in June remained at around 70 - 85.
I was immediately tested:

  • ovarian scan
  • endoscopy
  • colonoscopy
  • full body MRI
  • CT scan

All clear on all of the above - no sign of endometriosis either (and have no symptoms). Plan is to redo bloods in September. There are lots of reasons CA125 might be elevated eg. emdometriosis, around your period (I have hypthalmic amenorrhea, but there could still be fluctuations). I have also read that for some people, the base line is always a bit higher but you might never know why...

Good luck with the tests. I would suggest pushing if you can for the full list above but I'm overseas and in the private system.

One thing my Dr did say aside from - it can be normal and don't panic - is, as I'm sure you know this, that for anything sinister you're looking at numbers in the hundreds, the thousands.

OP posts:
JS135 · 17/08/2023 09:05

NLMUM80 · 17/08/2023 04:53

Hello! Sorry also not to have updated - there was so much going on, it was all rather stressful! My bloods back in June remained at around 70 - 85.
I was immediately tested:

  • ovarian scan
  • endoscopy
  • colonoscopy
  • full body MRI
  • CT scan

All clear on all of the above - no sign of endometriosis either (and have no symptoms). Plan is to redo bloods in September. There are lots of reasons CA125 might be elevated eg. emdometriosis, around your period (I have hypthalmic amenorrhea, but there could still be fluctuations). I have also read that for some people, the base line is always a bit higher but you might never know why...

Good luck with the tests. I would suggest pushing if you can for the full list above but I'm overseas and in the private system.

One thing my Dr did say aside from - it can be normal and don't panic - is, as I'm sure you know this, that for anything sinister you're looking at numbers in the hundreds, the thousands.

hi!
thanks so much for posting an update. I’m so glad to hear nothing sinister was found on any of your scans. So far I have had:

  • X2 pelvic ultrasounds (one of which TV)
  • breast ultrasound
  • Pelvic CT scan with contrast
  • colonoscopy
  • small bowel MRI ( but this also mentioned that there was no pelvic or upper abdominal abnormalities).

They are still wanting to monitor my levels as they keep fluctuating 50-95. Did your levels ever come back to normal? Are they planning on retesting them?

I do know some people with endometriosis that didn’t show on any scans, only with a diagnostic laparoscopy. It’s a tricky one to find on imaging.

NLMUM80 · 17/08/2023 09:10

Sounds thorough as far as your testing goes!
My bloods were redone once back in June to make sure wasn't just a one-off (it wasn't) - and I'm redoing them in September; then probably every 3 months from now on.
Endometriosis - it absolutely could be. I don't know much about it, I've never been symptomatic at all and I don't know anyone who has it so pleading ignorance on that...
I have read that it can be without much in the way of symptoms and it sounds as though I haven't had enough testing - e.g. the laparoscopy - to check it out. I guess from my Dr's perspective without any symptoms it hasn't seemed necessary..I have 3 kids and won't be having any more too so there's less pressure re any fertility issue.
I think their approach will be to keep monitoring the bloods and see how things are - some scans regularly repeated.
I also had a lot of checks for other possible cancers e.g. the blood test for pancreatic which was fine. Plus a breast ultrasound after the mammogram

OP posts:
worldwidetravel2017 · 06/09/2023 19:42

Mines back up to 80

I have a gynae appt this month

So far ive had ovaries scan - colonoscopy - endoscopy - pelvic scan

JS135 · 06/09/2023 19:44

When you say ovary scan, have you had an ultrasound only? If you haven’t yet had a CT scan you may be offered one soon

worldwidetravel2017 · 06/09/2023 19:47

No Ct scan yet

JS135 · 06/09/2023 19:53

worldwidetravel2017 · 06/09/2023 19:47

No Ct scan yet

Maybe bring this up to your gynae at your appointment, hopefully a CT or an MRI would give you some answers for your raised levels and hopefully some reassurance. Sorry you are having to go through this, the wait between tests is horrible, especially when there is a raised marker and the cause remains unknown after scans.

JS135 · 06/09/2023 19:55

Are you premenopausal? And are you taking the test at the same point in your menstrual cycle ? If you are too close to your period, levels will rise 2 or 3-fold.

NLMUM80 · 07/09/2023 05:23

I was also told that around period levels can raise considerably - along with the fact that your base line might be high, without you having known. Hope you get the MRI and CT soon. I now have to repeat the bloods every 3 months - heading in again later this month

OP posts:
MrDX · 12/01/2024 18:43

Wanted to add a note here in case it helps ease anyone anxious over high CA125…. I mean high as in hundreds. Posting this because we found little reassurance online.

A little knowledge is a dangerous thing, so wait for the experts to do their tests and scans. My wife had pelvic pain, and not much else, but CA125 of 330. It was easy for us to conclude cancer as likely because our research showed that many benign conditions have the figure high but nowhere near that high (usually 10-50 ish). Other findings showed readings like 1000+ can be endometriosis. I even found studies and graphs showing how it was rare (but not impossible) for CA125 in the hundreds to be cysts.

Long story short… my wife’s age, other symptoms etc max us think it was less likely cancer, but CA125 was haunting us. It’s early days but we’re getting strong indications she has endometriosis and associated cysts, and nothing malignant… based on more blood tests for tumour markers, the usual scans and an MRI. We’re no longer on the cancer pathway it seems.

So please don’t see research, posts etc on Ca125 and assume the worst. Perhaps we are lucky? Perhaps lots of people to get lucky don’t share their experiences, but this is ours. Remember, CA125 can associate with stress. Periods. Benign conditions. It can be 10, 100, or 1000…. But it’s not in itself clinically definitive else let’s face it, there wouldn’t be a cancer pathway to explore if it is/isn’t - as the CA125 alone would suffice. Truth is, in many people with cancer, it may not even be that elevated. It also changes fast…. For all we know my wife might have read half (or double) if she repeated the test a few days later.

Go through the process, and see what they say, rather than self-diagnosing. It’s hard… I know.

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