ca 125 @198 - know bilateral endometriomas....being screened for OC


I'm 45, no kids, was on the pill from 24 to 35, started feeling mild endo symptoms late 30's (didn't know it was endo back then), periods started getting heavier at 40, had a uterine polyp removed at 41 (benign), and via annual TVU they found 5cm endometrioma on left ovary at 42. Dr decided on expectant management and it's been stable for the last 3 yrs. In April 2016 another 5cm endometrioma was found on right ovary. On Aug 1st 2016 it had grown to 8x8x10cm. Dr scheduled me for laparoscopic surgery for Nov to have have them both removed. I also have several small fibroids.

As a precaution, he did CA125 test along with C19 and CEA.

CA125 came back at 198, so he's promptly referred me for screening to an oncologist as he feels that since I got endo later in life and my CA125 result is 198 he doesn't want surprises in surgery. C19 and CEA were normal.

I've had 4 TVU in the last 12 mths to monitor the situation, all were done by a very reliable Gynecologist who does ultrasounds one day a week, and there was never any doubt about any suspicious masses. I don't have any OC symptoms.

I am waiting to see the oncologist, but am 100% freaked out by that. I have read a lot about CA125 and know that it cannot be very reliable for cancer screening ... another well known expert GYN & surgeon saw my results and he considers them normal for endo & endometriomas.

Any similar experiences and insights are very much appreciated. I am flipping out a little know they'll redo CA125 and HE4 and TVU, but the waiting and anticipation are messing with my head.

All the best to all of you!


9 Replies

  • Hi M

    You have a similar history to me. First started with symptoms at 30 but I went undiagnosed for over 20 years. I had a hysterectomy though and was put on HRT. Huge pelvic mass found 7 years later at age 51 (13 cm). It was very aggressive and I was prepared for OC from a suspected ovarian remnant. My CA125 was over 1000. Was operated on by oncologist but it was found to be advanced endo caused by the HRT.

    I should think it is almost certain this will be endo and endometriomas do usually suggest endo elsewhere. If you are in the UK have a look at my post on the treatment pathway and if you are in England get a referral to a specialist endo centre. Look at my post on how to find one. At your age you don't want to be messed about in general gynaecology. You need thorough treatment.

  • Thanks!

    I am in Canada actually and ironically my GYN is the best in town for endo & surgery but she is on mat leave coming back only in Jan 2017.

    I hfound another specialist and incidentally he is British and very well respected. Also a very cautious man which is why he's running me through tests and oncology screening which is freaking the sh*t out of me. ;-)

    I've never had surgery so I needed to wrap my mind around that in preparation for November - now he's adding oncology to the plate. I am grateful that he's doing his job, but I am loosing my mind.

    I had a consultation with another top GYN&surgeon in town, who is known world wide, and he was not phased by my CA125 results. Problem is his waiting list is longer, which is why I chose to go with the other Dr.

    So I shouldn't really worry about CA125 result and just go through the oncology screening with as much serenity and detachment as possible?

    Thank you again for your support and info!

  • No, in terms of endometriomas raised CA125 often goes hand in hand. I hope all goes well. x

  • Thank you again! We should private message if possible. I have so much info as well about my experience and would like to share it with you so you can determine if you can share any of it with the public seeing how much support you offer on this site. You're an angel!

  • Hi, firstly sorry to hear you are freaked out like this! I have been there! Secondly Lindle is fab with her info so keep in touch with her, she has helped me. I was diagnosed with Endo Sep last yr, I am 43, but before that I was in your situation. I had symptoms which prompted me to go to GP who sent me for a scan & did a CA125 blood test. Scan confirmed 2 Endometriomas on left ovary. The person who did scan confirmed that they were not cancer & could be left alone as they were under 5cm & they would re-scan me in 3m. I was relieved. However, 2 days later my GP called me in & completely freaked me out by saying that my CA125 level was high & that she needed to refer me to an oncologist to see if I had OC. I was traumatised to say the least!!! My CA level was 45!!! The NHS didn't consider me a priority & wouldn't see me for 12wks which I took comfort in, however my GP had already done the damage by saying what she'd said so I got in at a private hospital. The consultant gynychologist wasn't phased either & neither was the person who did new scan but gynychologist suggested laparoscopy to be sure. I had never had surgery before either & this was also freaking me out!!! Now...this is where you need to listen to Lindle & make sure you see a proper specialist in Endo as this gyny claimed to be but he was ignorant to the condition & unsympathetic!!! He drained the cysts instead of de-roofing them, recommend that I just go on drugs & HRT to treat the Endo & failed to refer me to a specialist centre. Now the Endometrioma is back & it was less than 6m after having the op!!! Lindle helped me with finding the specialist centre & I'm now under them. They are keeping an eye on things. They told me that the CA125 test isn't reliable & will generally always be raised if you suffer from Endo. Usually someone with OC will have levels in the 1000's but again it's not reliable. I hope that this reassures you in some way but totally understand how you are feeling. Good luck & do your research as so little is known about how to effectively treat this condition. All the best to you!!!

  • I had my CA-125 done last year after I went to A&E with pain and was told it was probably a ruptured ovarian cyst. I hadn't been diagnosed with endo at that point - I'd been having problems for a while and the GP had told me it was IBS and that I was menopausal. It came back at 119 and the GP told my husband and I over the phone on a friday afternoon that with an abnormal result there was an 80% chance it was OC. Idiot. It detects 80% of cancers, which is not the same thing at all.

    My initial ultrasound was clear. CA-125 was then redone over the next couple of months and came back at 85 and 107. I was then referred to gynae by a different GP. Gynae said the CA-125 at that level together with my other symptoms was diagnostic of endo.

    Ca-125 is such a tricky test especially in the hands of someone who doesn't know how to interpret it. Hopefully yours is just endo related too.

  • Hi there , I have a very similar experience to you, I'm 44 , no kids. In 2014 I was very sick in ICU, during a CT scan they found 2 large pelvic masses (both around 8 cm) once I was discharged from hospital I was sent for another transfer vaginal ultrasound , the masses were unchanged . I didn't have surgery as I couldn't handle it after being in ICU.

    This year I went for another ultrasound , the gyni also sent me for an MRI and from the MRI diagnosed endometriosis.

    My blood test also showed elevated CA125 at 75 . I am due now for another blood test and gyni visit so we will see what they say. It's only in the last few months that I've started to have any problems , back ache, abdominal pain but unlike most my periods are extremely light.

    Haven't really got any insights, oh and the waiting does mess with your head....I was diagnosed with a tumor on my lip in 2015, so obviously pretty concerned now too. I've also read that elevated CA125 can be due to endo.

    Sending you a hug, try not to let the waiting stress you out!

  • Thank you Sissy and I hope all turns out fantastic for you! xox

  • Hi Ladies,

    Thank you so so much for your care.

    The Gynae who referred me to Oncology is a specialist in fertility and corrective surgery - he's not just your regular Gynae. He is also a Uni professor - he will remove the cysts and their walls (cystectomy) in Nov 2016.

    His concern is that I got endo in my 40's and that my CA level is at 198. The Royal College of Physicians guidelines basically stipulate that a mass with a CA level of over 200 should prompt referral to an Oncologist. And this is what he did. He is ultra cautious and I am extra paranoid. ;-)

    Now, what I did not tell him is that I was on the pill from 24 to 35 and started feeling what I know now were mild endo symptoms around 38. Had I not been on the pill, I might have developed endometriomas in my 30's. The first one was at 41. The second one now at 45. It is a bit textbook if you ask me. Also, I have had so many TVUs and all were done with a Gynae who does this 1day/week in addition to her work in the hospital. There was never ever any suspicion as to what those cysts could have been or any nodules, papilaries, etc

    A second expert Gynae & surgeon and expert in endometriosis that I have seen found my results normal and advised me to just NOT think about OC and go through the tests. There is always a small risk of C in pathology for anyone. I could have surgery with him but I'd have to wait until Jan 2017.

    Having said all of that, going for extra OC tests and meeting with Oncology is terrifying, so until all of that will be over with, my mind will second guess what reason dictates.

    Hugs to All,