Elevated CA 125 - How worried should I be?

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1

Hi,

Been a while since I’ve been on this forum! In August 2020 (aged 36) I was diagnosed with stage 3 invasive cancer, including a couple of lymphnodes. Her2 and ER positive also. I had two rounds of chemo pre surgery, a wide local excision, radio and then kadycla. Finished active treatment early 2022 and have been on Tamoxifen since my surgery (due to be reviewed in March next year I think), annual mamograms coming back clear. For several months I’ve been peeing a lot/not feeling like I empty my bladder on the first go. Went to my GP and they did an exam, couldn’t feel fibroids etc but referred me for a transvaginal ultrasound which is booked for end of January. They also asked me to do a blood test before that and it’s come back with a CA125 of 98, so they have put me on the 2 week referral pathway for gynaecology. My question is - how worried should I be? From what I’m reading online elevated CA125 can be an indicator for a number of things, but I’m wondering whether having a history of breast cancer increases the likelihood that its cancer? I also read somewhere else that in premenopausal women with CA125 >70 there’s a 49% chance of chance. Also, should I contact the BCN that I had when I was in active treatment to let them know/get their opinion?

Any info you could give would be gratefully received!

Sarah

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Sorry I can’t be of any help, but just wanted you to feel you were not in an echo chamber. Here’s hoping someone can help answer your questions. x

1 Like
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Ca125 is not very reliable as so many benign things can affect it. A cyst, having your period etc can knock it off. Mine was elevated years ago and it was a small cyst which was completely harmless. The 2 week pathway is just a precaution. I know it’s easy to say but try not be too worried.

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Thanks Charlie, trying my best! Glad to hear it worked out ok for you, hopefully it will be something similar.

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Hi Sarah,

Thanks for posting.

It’s understandable that you’re concerned about the results of your recent blood test showing an elevated CA125.

An CA125 level, above 35 U/mL, means a protein is raised in the blood. This may be caused by conditions such as ovarian cancer but as @charlie55 says many benign (non-cancer) things can also affect it. CA125 can be raised by normal hormonal factors such as pregnancy and menstruation as well as conditions such as benign cysts and fibroids, for example. A raised CA125 is an indication for further investigation and is not a diagnosis by itself.

You ask whether a history of breast cancer increases the risk of this being caused by a cancer. Some women may have a gene mutation such as BRCA which could increase the risk of both breast and ovarian cancer, but you don’t say whether you carry this gene. Even if this were the case the CA125 result would still need further investigation as so many other conditions can cause it to be elevated.

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