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Original poster

Raised C125 levels and CT scan

19 replies

seennothinglikeit · 05/05/2023 10:33

Recent blood tests showed raised CA125 level of 43 so was sent for a ultrasound which showed a small fibroid and no major concerns.

However they are now going to check CA125 levels again and if still raised they will request a fully body CT scan. I wasnt worried after finding out about the fibroid but now concerned they are looking for something else in other parts of my body.

Any similar experiences?

OP posts:
HowdoIgetbacktothe80s · 05/05/2023 11:49

My sister had levels similar to yours, turned out that she had endometriosis (which is often un detected with a ct scan). I believe fibroids can also raise the levels too.

Timeforaswim · 05/05/2023 21:29

That's weird. I've just had v similar. Ca125 of 37. I had both internal and external. She said she thinks it's a fibroid but is repeating blood tests snd wants me to have an mri. I'm hoping they're just being v cautious snd thorough.

Original poster
seennothinglikeit · 05/05/2023 23:14

Yes I guess it's good they're ruling things out. Just daunting when they say full body scan, worried they find something else!

OP posts:
Michellebops · 05/05/2023 23:20

My levels were over 50 and I was sent for pelvic ultrasound as have a history of ovarian cysts.
Ultrasound results came back with small cysts but no further action at this time

sladys · 05/05/2023 23:22

HowdoIgetbacktothe80s · 05/05/2023 11:49

My sister had levels similar to yours, turned out that she had endometriosis (which is often un detected with a ct scan). I believe fibroids can also raise the levels too.

Exactly same for me. My levels were 67.

Done so many tests to rule out anything more sinister. Was nerve wracking at the time but great they were so thorough

Original poster
seennothinglikeit · 14/05/2023 10:00

CA125 levels were still raised of 52 after clear ultrasound, well just a small fibroid, so getting a CT scan, now worried they will find something somewhere else in the body.

OP posts:
worldwidetravel2017 · 27/06/2023 19:41

seennothinglikeit · 14/05/2023 10:00

CA125 levels were still raised of 52 after clear ultrasound, well just a small fibroid, so getting a CT scan, now worried they will find something somewhere else in the body.

How are you getting on with it all ?
Have you had the scan ?

I have raised ca125

Original poster
seennothinglikeit · 28/06/2023 05:59

Had CT scan (as ca 125 still raised) which was clear of anything sinister, fibroid only.

However they found benign lesion on liver so I need a MRI, panicked at first but think they are common as often found when scanning for other things.

Think the raised blood test was due to fibroid and as several medical staff have said- very unreliable for peri age women.

They can rule anything nasty out fairly quickly , unless you're levels are in the 1000s -it's likely to be something like a fibroid.

OP posts:
worldwidetravel2017 · 08/07/2023 13:37

seennothinglikeit · 28/06/2023 05:59

Had CT scan (as ca 125 still raised) which was clear of anything sinister, fibroid only.

However they found benign lesion on liver so I need a MRI, panicked at first but think they are common as often found when scanning for other things.

Think the raised blood test was due to fibroid and as several medical staff have said- very unreliable for peri age women.

They can rule anything nasty out fairly quickly , unless you're levels are in the 1000s -it's likely to be something like a fibroid.

Yep - had the scan...
Had level of 90 something
& then did one more when not on period
And had 70 ca125..

Had a small fibroid found on transvaginal

JS135 · 07/09/2023 17:24

seennothinglikeit · 28/06/2023 05:59

Had CT scan (as ca 125 still raised) which was clear of anything sinister, fibroid only.

However they found benign lesion on liver so I need a MRI, panicked at first but think they are common as often found when scanning for other things.

Think the raised blood test was due to fibroid and as several medical staff have said- very unreliable for peri age women.

They can rule anything nasty out fairly quickly , unless you're levels are in the 1000s -it's likely to be something like a fibroid.

Hi!
sorry you are going through this but glad to hear your scans have come back clear. I am in a very similar situation. My ca125 is 50 and all the scan has shown is a small fibroid. Were you ever told what size your fibroid is? I have two intramural both around 1.5 cm so very small. I wonder if it being so small can be the cause of the raised levels.

EweCee · 07/09/2023 17:28

If you have any thoracic infection recently, your Ca125 can be raised I think (I’ve had ovarian cancer so had raised CA125 as initial diagnostic, but then years later had raised results but turned out to be nothing apart from a broken rib - from a fall - and resulting chest infection which they said caused the raise)

JS135 · 08/09/2023 14:24

I had yet another repeat of the ca125 come back at 47 this time. So no real change over the last year (54 September last year) but still elevated. I have been booked in for a laparoscopy to see what is going on and to take peritoneal biopsies. I’m so nervous of what they might find.

Abeli · 08/09/2023 15:51

My Ca125 was 69 in June. Repeated a few weeks later and the same. CT and ultrasound show nothing so I am waiting to see gynae. Post menopause but history of breast cancer.

JS135 · 10/09/2023 09:12

Hi!
sorry to hear you are also going through this. This blood test causes a lot of anxiety, however it’s great that your scans were clear. I hope your gynae can give you some answers soon

worldwidetravel2017 · 29/09/2023 12:38

Hows everyone ?

Im having ct scan re my abnormal ca125

Theyve done transvaginal already

Also had a gastoscopy 4 stomach

FlippingWell · 29/09/2023 12:43

This happened to me recently. The scan was normal apart from my usual fibroids. The gynaecologist said that the CA125 is pointless as a screening test. It gives false positives and causes women so much anxiety. She said that the main important thing was symptoms such as new bloating or unexplained weight loss. She felt that GPs should not be doing the CA125 as on its own it is a meaningless figure.

Good luck OP.

ScabbyHorse · 04/10/2023 21:33

I had raised CA125 and a swollen abdomen... they did a scan and it turned out I had adenomyosis. This has improved by going on the mirena coil.

worldwidetravel2017 · 05/10/2023 09:29

ScabbyHorse · 04/10/2023 21:33

I had raised CA125 and a swollen abdomen... they did a scan and it turned out I had adenomyosis. This has improved by going on the mirena coil.

Just read the links between that finding and miscarriage / trouble concieving :(

JS135 · 09/10/2023 07:39

Hi, just an update for anyone in a similar situation. After having ca125 fluctuating between 50-90 for a year and clear scans, I had my diagnostic laparoscopy and stage 2/3 endometriosis was found with adhesions in surrounding uterus, bladder, bowel and peritoneum. I am still awaiting biopsies but this could take 4 weeks

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