High CA 125 level?????? Panicking

[Amyskb]

I hv bilateral endometriomas. My doctor tested my ca 125 level n they came to be higher. I will talk to my doctor tomorrow. In the mean while, is it normal? Im panicking?

[Hidden]

Endometriosis can cause this level to be raised, please try not to worry. A raised CA125 is quite normal with Endometriosis xxx

[Amyskb in reply to Hidden]

Thanks for replying. I hope everything will be ok. Before 2day i didnt even know abt this test. I dont knw what does it mean.

[Adventure101]

Hi I recently had CA125 done before a laparoscopy to remove endometriosis cysts and it was high but all biopsy came back as endometrial so high CA125 is completely normal for endometriosis

[Amyskb in reply to Adventure101]

Thanks for replying. This endo really screws with my mind and body.

Hope u hv recovered from ur surgery and feel better now.

[Adventure101 in reply to Amyskb]

Thanks things are still bad my cysts already started growing back after 5 weeks so just feel like im back a square one except with a load of extra hormone therapy added that cause horrible side effects... waiting to see another specialist to see if they have any ideas to slow the cysts down from growing

[Amyskb in reply to Adventure101]

Im sorry to hear that. How big were ur cysts? Didnt your surgeon remove cysts completely?

[Adventure101 in reply to Amyskb]

The one on my right ovary was 15cm and one of my left 10cm, surgeons removed as much as they could which was most of them they said if they removed more it would of damaged my ovaries and as i haven’t had kids and am only 26 they didn’t want to risk it

[Amyskb in reply to Adventure101]

We live in a world of such advanced science and techno n yet its sad that there is no permanent solution to Endo. Im sorry you hv to go through all this at such a young age.

[Gaianex]

Hi! I have bilateral endometrioma amongst other things which were checked for due to a high ca125 reading. From what I've read the reading can be raised due to many things including endometriomas. I wouldn't worry. If its gone up its likely just something is irritated.

[Amyskb in reply to Gaianex]

Trying my best to stay calm. Thanks for replying

[megan31585]

Hi! I had nearly the same situation: bilateral endometriomas and an elevated level of CA125 level of 75. Once they went in and did a biopsy and proved there was no cancer I realized it was just from the endometriosis that made me have a higher level CA125 which is pretty typical with endometriosis, which is great news

[Amyskb in reply to megan31585]

Thanks for replying. I hv same level of ca 125. I hope everything will be okay. Will talk to my doc today.

[girli1111]

Mine was 475.... and was due to my endo, although I was seen urgently by gynae oncology at the time. So don’t panic. X

[Amyskb in reply to girli1111]

Thanks for replying.

Im just trying to contact my gynae. Just need to hear her say "everything is ok".

By the way you know what does CA 125 level indicate for endo patients?

[girli1111 in reply to Amyskb]

It just indicates inflammation in the abdominal area, that’s my understanding. My level was tested after my ‘ovarian mass’ was picked up on an mri scan for hip issues, hence the urgent referral. (I was already aware that I had endo as I had had previous surgery). Long story short, even mri and ct scans weren’t conclusive about what my mass was, as it was all a bit of a mess in there, but excision surgery and oophrectomy sorted me out!

[Amyskb in reply to girli1111]

Im glad everything worked out for you in the end. This endo is new for me n im still gathering info and trying to understand its effect on my body. Im in between doctors trying to access my next step. Its difficult and screws my mind.

[fytdkd]

My CA125 is usually about 80/90. It’s often raised in endometriosis because it doesn’t actually test for cancer but rather it’s symptoms. CA125 is a protein that marks tumors - cancerous and non-cancerous - which is why they need to do more investigations: it doesn’t mean much on its own. Further, endometriomas are tumour like, so of course it will be up. So don’t worry - the CA125 numbers can get into the thousands and it’s most likely just your endometriomas.

[Amyskb]

Thanksfor replying. I still coudnt reach my doc. It answers some of my questions. Im really glad I joined this endo com.

Just a question. Does high CA 125 numbers signify the intensity of the disease? Higher the number more the disease?

[girli1111 in reply to Amyskb]

Absolutely not

[Amyskb in reply to girli1111]

Ok. Thank u soo much for all the info

[BoilerMissle]

Mine was 1826. Fortunately, no cancer was detected.🙌 It is terrifying, I know, but it is VERY likely that your elevated reading is due to the ending (and/or other things...were you menstruating at the time of the test?) for you. Worst case scenario, you are in the right place, working with physicians, taking care of your health. But it is more than likely NOT as scary as it sounds.

[Amyskb in reply to BoilerMissle]

Yes it is terrifying. Thanks for ur words of support. If it wasnt for this forum ( i cant reach my doc) i wud hv gone crazy by now.