Endometriosis & CA125 result

[Oamanda6]

Hi there I have endometriosis and currently have a cyst on left ovary as well as cystic right ovary. Had transvaginal scan on Tuesday and then got blood tests on Wed. The result of the CA125 is 619 which is very high (it should be under 35). Anyone else had such a high reading?? I am being given an MRI ASAP before my surgery but should I be worried that this could indeed be ovarian ca. ??

[Noorri]

Hi

I had had high CA 125 which raised till 1500 and thank god it was nothing else that endo. my doctor explained that there are many other conditions that makes your CA125 rises, such as inflammation, appendice, endometriosis, ovarian cyst etc... Moreover it is said that CA125 is not a proper test for Ovarian Cancer but it is a good tool to monitor treatment.

Therefore, i would say that you should not worry

[malred8]

Hi

I've had high levels, not been told what the level was, was retested a few weeks later as was told to do it a certain time of the month. Next one came back fine so hopefully your wont mean anything too sinister but at least they are checking you quickly.

Good luck, hope all goes well

Malred8

[Jillanovitch]

Hi mine was off the scale, I had chocolate cysts and until the test results returned I was scared!!! But it was endo, it causes the rise of the test . Awful times try not to worry, the worst will soon be over good luck xx

[Sunshinegirl00 in reply to Jillanovitch]

How high was yours?

[Oamanda6 in reply to Sunshinegirl00]

Mine was over 600 just under 2 year ago and is now sitting over 400 x

[Imp20]

I too had a raised level of 169 in April - had another test in June to which it had dropped to

102

My gynaecologist has stated it is more then likely Endo

I also have a growth mass on my right ovary - he told me he has a patient who's CA125 was at over 500 and she did not have ovarian cancer

None the less - it does make you very anxious

I'm having a hysterectomy on the 18th July

To be honest, i'll be glad when it's all gone

Good luck to you x

[Cloudyrain]

Think mine was in the 900s when I had 2 cysts and endo, it's more of a tool to monitor effectiveness of treatment, though some doctors don't approve of testing CA125 at all! If you have a look at "my ovacome" on health unlocked, and the main ovacome website there is loads of information. They also have special nurse practitioners who you can call or email.

Good luck honey x

[Pands]

HI, I have just posted a small bit on your other question about this. I see you do have endo and a cyst so the likelihood is that is what is causing the elevated readings (fingers crossed for you). Good luck x

'CA125 shows a levels of inflammation in the abdomen. Yes endo, especially presenting with choc cysts, can cause it to raise. Mine was up (not as high as 600+ though from what I recall but I still went into slight-panic-panic mode) and went down after my lap and excision surgery. I hope your Dr is speaking to you as to what happens next? Was it checked because of endo? Best wishes.'

[muffiny]

Hi please don't worry - I had levels off the scale too and was told by idiotic locum GP that the grim reaper was practically standing by my shoulder. Had a week of hell waiting for emergency gyno appointment to be told by specialist that this test is a complete waste of time for pre-menopausal women with endo as it elevates the levels. I just wish doctors knew what they were talking about before they put the wind up you ! All the best.

[Oamanda6]

Thanks folks feel a bit better now x

[Margaret14830]

I know of cases where high CA-125 was not cancer. I am glad you are getting good medical care and wish you all the best with your outcome. Please remain positive. God Bless.

[Oamanda6]

Thank you x

[Crezzy73]

Hi, i'm english but live in Australia. I have endo and am always worrying about my health, forever at the doctor, it's exhausting. I had been feeling nauseous and have had tests to rule things out. Saw a naturopath and she wanted a load of bloods taken so i went to my GP and one of them was CA125. The doctor didn't want me to have it because she said historically it was hoped to screen for Ovarian Cancer but it shows false positive in too many women without OC - but as soon as she said that I had to have it done and now i am freaking out. I had a pelvic ultrasound and transvag ultrasound 3 months ago and all normal. I just know that the CA125 will come back raised because I have my period and I have endo. And it's a couple of days before Xmas and all I can do is sit and google and terrify myself. From all your experience, can CA125 be raised with endo and if it comes back high and I've had a normal U/S, should i not worry about it?? Why on earth is a naturopath requesting tumour marker tests?? I'm seeing her tomorrow and am really annoyed. Thanks, crezzy

[Becky80]

Hi, I know this is an old post but I promised myself I would post a reply as soon as I could. I constantly returned to this page and found it really comforting during a difficult time.

So, I am 34 and undergoing fertility treatment. During my first appointment at the specialist I was Internally scanned they found a 7cm cyst which they suspected was an endometrioma. I had a routine ca125 blood test and a date was set for a laparoscopy. I'm not sure if this is relevant but the blood test was done the day before I got my period, I suspect it have had a role in what happened subsequently. The next day I and was called into the doctors office (which was a bit worrying as the nhs never moves that quickly). It turned out that I had a very high level of 590 and it was explained that it could be due to ovarian cancer. I was told to prepare myself and a fast track ct scan was scheduled.

There were some very dark days whilst waiting for the results and my heart goes out to anyone who has to go through this.

I didn't actually find out the results of the ct scan until my scheduled laparocopy but the surgeon told me the multi disciplinary team were confident it wasn't cancer and the surgery went ahead. The surgeon also said if he suspected anything suspicious he would open me up and remove my ovary. When I woke up I knew he hadn't opened me up so it sounded positive.

The surgery revealed stage 4 endo (I was told I was riddled with it) and the endometrioma was confirmed. About 4 weeks after the surgery I returned to the surgeons office and he confirmed I didn't have cancer and IVF was the best option for my infertility, my most recent ca 125 level was 44.

While waiting for the results I constantly googled "ca 125" and found that there are quite a few scientific studies showing woman with endo having ca levels in the 1000s. I hope the lady who first posted this had good news but for anyone who is currently going through something similar, I hope you have a positive outcome and remember this test isn't always accurate! Stay strong!

[Oamanda6]

Hi there. Yeh my CA 125 is still in the 100's. They really shouldn't alarm ladies so much with this test, as it's always raised in ladies with endo and isn't reliable for diagnosis alone for ovarian ca.

Since that post I unfortunately am back at same point and due to have surgery again on 13th May! My endo is advanced and just keeps coming back. I'm also trying to conceive so it's a bummer!!

[Sunshinegirl00]

My ca125 was over 6000 was told I had ovarian cancer, all a big shock as this was picked up after I had been admitted with blood clot in lung which was caused by the cysts. I had hysterectomy and both ovaries and appendix removed by abdominal open surgery in December . Results in jan came back no cancer found it was severe endometriosis .. So scary but once cancer was mentioned I never questioned the treatment as even Harley street oncologist said it was cancer. Now at 42 I am in menopause ☺️

[Oamanda6]

Goodness surely that's a bit of a screw up for you then if they diagnosed you incorrectly!? I wouldn't be v amused!

[Sunshinegirl00 in reply to Oamanda6]

Just so pleased it wasn't cancer, gynaecologist is doing a case study on me as they have never known CA125,so high.

[Oamanda6 in reply to Sunshinegirl00]

But now they have destroyed any chance of conceiving!? Or have you got kids? I would be absolutely livid if this happened based on a CA125 result, it is always raised in ending and it's not a reliable stand alone diagnosis for ovarian ca it's used more when undergoing chemo. Obviously your surgeon must have just panicked a lot!

[Pinky-0183]

I just was referred to a oncologist because my CA125 is 631. I am waiting for them to call me. I am an anxious mess. Has anyone been through this and got to keep their ovaries and have more children? I am 32, and want more children. I have a son who will be 5 in November.

[3rashed]

Can anyone tell me what dose endo means as my wife got ca125 I'm really worried