raised ca125

[Kcp289]

hi, so I have had 3 results of ca125 around 100-106, they are not increasing but not improving. I was seen on a 2WW and had a tv ultrasound, they said they can’t find a cause for it and my ovaries were polycystic but otherwise normal they suspect my endometriosis is the cause for the raised ca125.. After the 3rd result been 104, I’ve been referred for an urgent MRI and I had this on Saturday. Has anyone experienced this? How long did you wait for MRI results? I’m going out of my mind worrying.

[RosieFalkor]

My CA125 goes up and down between 85 and 45. It’s very normal for Endo and it seems to be really common to have it as high as 300.

[Kcp289 in reply to RosieFalkor]

Thank you x

[Stormtrooper4]

Hi, my CA125 was 65 and I immediately went into panic mode. My GP said she was concerned about Ovarian Cancer but never once mentioned that it could be endometriosis that could cause the raised level and she specialises in womens health so should know better and should have reassured me! I too was put on the 2WW and it was hell. I was beside myself with worry. Turned out I have a large endometrioma.

Also, when I saw the Consultant he said he only worried about CA125 levels if they are in high hundreds and thousands.

People say try not to worry but I know that is impossible.

Because you are in the 2WW you shouldn't have to wait too long for your MRI results.

Fingers crossed everything is ok x

[Kcp289 in reply to Stormtrooper4]

Thank you. That’s reassuring to know x

[Goinginsanewithpain]

hey, I totally know how you feel , it’s really worrying. Exactly the same thing happened to me. I have stage 4 endometriosis and it’s always raised around 90-105 , but the consultant told me that it’s the inflammation from the endo that raises it and it’s really common for that to be the case. So glad you are getting it checked and quickly though but please try not to worry too much x

[Kcp289 in reply to Goinginsanewithpain]

Thank you. How do you find out what stage endometriosis you have? Did the MRI give that information? X

[Goinginsanewithpain in reply to Kcp289]

Hi, it was a laparoscopy that confirmed it but now waiting for an MRI with contrast to fully assess how deeply infiltrated it is so that this information can be used to determine the next steps of my treatment which are likely to involve a hysterectomy and colorectal surgery.

I don’t have experience of an MRI for endo (prior to this one that I’m waiting for) so I don’t know from my own experience if MRI’s can determine the staging of endo or not, but I’ve read posts on here about people being diagnosed with endo from an MRI and ultrasounds etc, but for me ultrasounds never showed anything wrong at all and it was only during a recent laparoscopy that a diagnosis of endo at stage 4 was confirmed x

[Kcp289 in reply to Goinginsanewithpain]

Yeah I was the same with the USS, they said it was PCOS but then laparoscopy a few years ago confirmed endometriosis. I’m hoping I get some answers this time from the MRI, they are suspecting it may be on my bowel and potentially appendix as I’ve been sent in twice with suspected appendicitis and told it endo.

Hope you get a plan for yours soon x

[Goinginsanewithpain]

I really hope you get answers from the MRI soon too. It sounds like we might have the endo in similar places. Fingers crossed we get answers and can move forward with what’s next for us both x