Fluctuating Ca125 anyone??

[Js27]

Hi!

I’m very anxious right now. For the past 9/10 months I have been going back and forth to my GP because of ca125.

It started in September 2022, roughly 9 months ago. I went to my GP with bowel issues and they did a ca125 test. It came back at 53 so it required an urgent referral for ultrasound which came back clear.

Fast forward 8 weeks I was retested. It had risen to 95. My gynaecologist said that because this test can fluctuate in someone my age (25 at the time), she would just retest it in 8 weeks and if it increases again it would be another scan. Anyway, I retested and it came back at 54. So lower, but still not below the normal 35 level. During this time my periods were very irregular and the tests were taken either day 1 of period or not long after it had ended. My gynae was happy with this so she discharged and I left it.

6 months later my GP asks me to redo this test to see if it has come down - it came back at 86. The test was taken on the last day of my period. So I have once again been referred to gynae.

I’m so anxious about what is going to happen next. I keep thinking that something was missed on the first scan. Has anyone else had similar experiences? Can someone’s cycle have this much impact?

[Limeslime]

Ah ca125, my old nemesis!
Yes I’ve been through this and I honestly feel like this blood test is not fit for purpose outside of a very select target group.
I had the same experience as you. I had x3 blood tests all taken during or immediately after my period and the my results ranged from 57-88. On the 4th time, I made sure tjj on arrange it for mid cycle and my result came back at only 31.
Months of stress and awakening my health anxiety all because of a menstrual cycle!

I had an interval ultrasound scan, an abdominal ultrasound scan, a colposcopy and a hysteroscopy. All clear!
Usually aftr a few high levels with a clear scan, you’d be offered a Ct scan. Luckily I didn’t get that far.

[Js27]

Thanks so much for responding. Sorry you too had to go through all of this. The anxiety that this test causes is horrible. I’m so glad to hear your levels came back down to normal.

I’m speaking to my gynae again on Tuesday to see what to do next. Although I did get the feeling that she also is not a fan of this blood test and wrote quite a passive aggressive letter to my GP questioning why it was done in the first place. Nonetheless, she did say because it had been done and because it is elevated, it has to be checked.

If you don’t mind me asking, did you ever find any cause of your elevated levels? Or was it simply put down to menstrual fluctuations? My only real symptoms are extremely painful periods, although this only really lasts for a day. I did have some irregular bleeding but my gynae put that down to a polyp that was since removed. Although she said this wouldn’t have caused the ca125 changes I’m seeing.

[Limeslime]

So I had the ca125 done initially because I’d been having some bleeding after sex, then I had a period that lasted over 2 weeks!
During the scan they said there was a very small amount if adenomyosis but other than that everything was fine, and they put my irregular bleeding down to hormones.
So yeah, the raised ca125 could have been caused by the adenomyosis but the gynae said that because it came down again it was much more likely to be caused by my menstrual cycle. She said it happens all the time and felt this blood test shouldn’t really be offered to woman who haven’t gone through menopause and that GPs need more training regarding the use of this blood test.
The other thing to remember is that when ca125 is raised as a result if cancer, it won’t fluctuate….it’ll just keep rising. So the fact yours came down and then up again is another supporting factor to it being menstrual related.
Also, lots of other things can cause raised ca125, even IBS, infections, bad diet, gastric issues, cysts, endometriosis etc. it’s very rarely cancer that is the cause for it! I found out that in my age group (late 30s) a raised ca125 only carried a 6% risk of cancer. So a 94% chance that it is caused by something benign! For your age, those statistics will be even better!
My advice…
Do a detox diet for a few days before your next blood test and make sure you have it done when you are neither menstruating nor ovulating and watch those m numbers plummet!

[Js27]

So I had the ca125 done initially because I’d been having some bleeding after sex, then I had a period that lasted over 2 weeks!
During the scan they said there was a very small amount if adenomyosis but other than that everything was fine, and they put my irregular bleeding down to hormones.
So yeah, the raised ca125 could have been caused by the adenomyosis but the gynae said that because it came down again it was much more likely to be caused by my menstrual cycle. She said it happens all the time and felt this blood test shouldn’t really be offered to woman who haven’t gone through menopause and that GPs need more training regarding the use of this blood test.
The other thing to remember is that when ca125 is raised as a result if cancer, it won’t fluctuate….it’ll just keep rising. So the fact yours came down and then up again is another supporting factor to it being menstrual related.
Also, lots of other things can cause raised ca125, even IBS, infections, bad diet, gastric issues, cysts, endometriosis etc. it’s very rarely cancer that is the cause for it! I found out that in my age group (late 30s) a raised ca125 only carried a 6% risk of cancer. So a 94% chance that it is caused by something benign! For your age, those statistics will be even better!
My advice…
Do a detox diet for a few days before your next blood test and make sure you have it done when you are neither menstruating nor ovulating and watch those m numbers plummet!

Hi, thank you so much for your reply. I’m so glad that yours came back to normal and you didn’t have to rescan.

I have seen a few people go through the same scenario, it is reassuring but I just can’t help but worry that this won’t be the case for me.

I have since had a CT scan and I’m currently waiting for the results to come back. I have booked in for another blood test on day 18 of my cycle to see if this makes any difference. Honestly I’m just so low at the minute and thinking the worst, my gynaecologist didn’t seem very reassuring this time as she was last time and although it’s fluctuating but still above normal she really wants to push for tests which is making me so anxious. She even mentioned a laparoscopy with peritoneal wash depending on the CT scan which has completely freaked me out. I’m a science researcher by trade so I have been through every paper on ca125 and get conflicting results.

The waiting is the worst

[Js27]

Hi, thank you so much for your reply. I’m so glad that yours came back to normal and you didn’t have to rescan.

I have seen a few people go through the same scenario, it is reassuring but I just can’t help but worry that this won’t be the case for me.

I have since had a CT scan and I’m currently waiting for the results to come back. I have booked in for another blood test on day 18 of my cycle to see if this makes any difference. Honestly I’m just so low at the minute and thinking the worst, my gynaecologist didn’t seem very reassuring this time as she was last time and although it’s fluctuating but still above normal she really wants to push for tests which is making me so anxious. She even mentioned a laparoscopy with peritoneal wash depending on the CT scan which has completely freaked me out. I’m a science researcher by trade so I have been through every paper on ca125 and get conflicting results.

The waiting is the worst

Update- CT scan was normal, except for a very small common cyst <2cm. To say I am relieved is an understatement. However the gynae did say she didn’t know why my levels were fluctuating and this is unlikely the cause so she is going to repeat the test in 3 months time. If raised it will be a laparoscopy for possible endometriosis.

[Js27]

Hi, just an update for anyone in a similar situation. After fluctuation ca125 for a year and clear ultrasounds and CT 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.

[Blonde123]

Hi. I’m sorry you e been through this. Will they be removing the adhesions? Have you ever had a c section?