I found a lump in my lower abdomen just over a week ago - went to GP same day who did an external and internal examination then sent me for a blood test which showed a CA125 reading of 53. Now had urgent referral to gynaecologist and for an ultrasound scan. Panicking about ovarian cancer, but could it just be endo and fibroids? I was diagnosed with endo in May 2021 after a laparoscopy and told I had a large fibroid whilst pregnant with my second child last year. Have recently stopped breastfeeding so no doubt hormones all over. Has anyone else had a high CA125 reading and it turn out to not be cancer? I'm nearly 35 years old. I've had two c-sections - could the lump be anything to do with this? Any other similar experiences welcome!
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K-Bear88
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Yes mine was around 1100 and thought to be end stage ovarian cancer from a remnant as the mass was so aggressive. It turned out to be endo. CA125 isn't really useful as it is raised for many reasons, including with endo. Please try not to worry as many with endo, especially with endometriomas/severe disease will have a raised CA125.
Thanks very much for your reply - it's reassuring to hear other's stories. And at 53, it sounds like my CA125 level isn't really that high. But the doctors panic you a bit when I have never heard of CA125 til last week and after talking to three doctors not one of them said that 53 isn't actually that high when I've read on here, some women have readings in their thousands. Will see what the gynaecologist says tomorrow. Thanks again x
I’m sorry you’re going through this. It’s very hard not to worry. I had a ca125 of over 1800 and it turned out that I’d had a chocolate cyst which had been leaking and burst. They took blood samples from me (over a year ago) to assist with a study because they often find that it’s not necessarily an indicator of cancer. Hopefully you’ll hear more positive stories to help you get through the stressful wait. 💛
Thanks so much for your reply. It is helpful to hear other more positive stories. Dr Google hasn't been good for my mental health this week!! I have had so little information about CA125 that I had no idea what it was until I searched it myself. It seems as though my reading isn't actually that high so hopefully it is endo/fibroid related. Will see how I get on at my appointments this week. Thanks for taking the time to reply x
same hon, mine was 55 and stage 4 endo. Try not to panic, I was just like you, but didn’t know I even had it. The test helped me get diagnosed, but it was scary waiting. Xx
Hi! Did you also have an endometrioma causing the raised result ? I have had similar levels but clear scans, finding it hard to find anyone who had elevated levels without endometrioma x
Hi! Thanks so much for the reply on the other post. I haven’t had an mri yet, it hasn’t been suggested, so far my gynae has been trying to rule out cancer as a cause for the rise in ca125 so has done an ultrasound x2 and an abdominal/pelvic CT scan. I’m waiting to retest the levels in a few months, she said it’s likely I have adhesions causing the rise and pelvic pain that haven’t been seen on the scans. If it comes back raised again it will likely be a diagnostic lap.
I’m quite concerned with the clear scans as a lot of people on here with raised ca125 have had some sort of abnormality whether it be endometrioma or other cysts
Oh bless you. My ultrasound was quite clear to be fair, and I was fortunate to have a radiologist who had scanned me 4 years before and suggested an mri to check further. It’s easy to say not to panic, but try not to, big hugs, x
Hi, another one here who had over 100. I had a large endometrioma and stage 4 endo. I was as terrified as you when i got the result with no mention that endo could cause it. Try not to worry x
That's the thing - no GP explained that other things could cause it and that 53 isn't really that high. Only that it could be a sign of ovarian cancer....what else was I supposed to think?!!
Hello, Ca125 blood test alone when having/suspecting endo is not useful enough and scares ladies unnecessary. What they should do is Test ROMA which measures Ca125 and HE4 and that test calculates algorithm which tells what's the likeness of you having ovarian cancer.
I had one recently and even though Ca125 level was too high (endo) HE4 level was low and then algorithm was low which means I'm at very low risk of ovarian cancer.
Test Roma I had done in Poland. It's a standard but very powerful test. Don't understand why they can't adapt it in UK.
I'm sure you will be fine and it will turn out Ca125 is high because of endo. Good luck and try not to stress
Thanks for that detailed reply. I have read a little about the Test Roma in the last few days. It would seem to make more sense to do that than just the CA125 alone. I have definitely been panicked unnecessarily
Dont worry when i got emergency referral they also did my ca125 and got worried cx it was way tooooo high. Doc gave m birth control and told me to re do it within 3 months
That was the time I thought about every bad thing could happen and all . Cx when I searched on google it gives you different kind of indication.
But i had my surgery done and I asked my doc why it went too high
He said it is because i hv stage 4 endometriosis & frozen palvic
It is normal when there is an inflammation inside thats why
Alarming situation is when its keep coming high that doc needs to decide or ask them to do MRI
Hi i had that test and mine was 50, I've been told by three gynecologists and another consultant that it's nothing to worry about, it has to be in the thousands to be cancer. Periods, fibroids, cysts, adenomyosis and endometriosis can cause a cause a high reading. I know its scary freaked me out too. Sending you a big hug x
Thank you. It is scary when you literally no nothing about it! I saw a gyneacologist today who said they would expect a cancer level to be well into the thousands. If only my GP had said that last week, maybe I wouldn't have had so many sleepless nights! X
Hi i totally agree with you. I was told it was suspected ovarian cancer, thankfully I was booked in for an ultrasound scan a week later, but i must admit that week was awful. The consultant who did my ultrasound was furious at my doctors for doing the test. She said why they do this test on pre menopausal women is ridiculous. She told me I had nothing to worry about. As have three different gynecologists. They should explain things properly in my opinion. I hope you feel a lot less anxious now and get a really good night's sleep x
hi there , this time last year I went to the gp with pain in my right side he did a ca125 test which was 109 it terrified me ! I googled n googled , I was sent a fast track referral and put on Valium while I waited the 2 weeks as I was a mess ! I saw the Gyno he reassured me greatly then I went for an ultrasound yes it was endo he then sent me for an mri which confirmed it , then I got put on the mini pill I’m so much better now however I still haven’t seen the endo specialist 😬
when I was diagnosed they referred me an appointment came for October it was then changed to today last week today was cancelled and now. I’m on a waiting list !! But like I say now I’m on the mini pill I’m great .
Please don't panic!!!! I went to my drs with the same. My GP rang me in 2021 and told me I was at high risk of ovarian cancer to prepare for the worst, it was endometriosis cysts and a huge mass in me.
Wait until you have all of the results etc. I know it's easier said than done.
Mine was something like 1600, I didn't find that out until much later though.
Thank you - I think the GPs can scare you sometimes can't they until you see the specialists. Not criticising the GP though - I've also a lot to thank them for!!
Likewise. I think it’s useful to broaden the view when looking through the Ca125 lens and know it can be indicative of endo presence as well. It’s not simply for cancer. That said checking is the holy grail for your sake xxx 😘
I get raised prolactin and MGUS too. Both of which caused enormous uproar and medics twitching. One remains steady presence (MGUS ) and indicates a shift with the immune system - no surprises there with endo being immune modulating. Prolactin is fruit loop for no apparent reason but there have been treatments for endo using prolactin antibodies that’s been reported successful and less side effects than traditional treatments- so go figure there’s some kind of link somewhere. Prolactin it seems also indicates inflammation and they are figuring it maybe involved with the immune system. For years these have been flagged way before the endo and adenomyosis diagnosis but I reckon …… joining the dots will happen at some juncture.
Hello there, I was diagnosed with severe endo with adenomyosis in 2012 (after putting my foot down to have further investigation into my painful periods which I've had since starting periods at age 11). I too had a high reading of CA125 but I can't recall what the reading was (sorry), but my consultants put it down to my endo and I was advised not to worry. Shortly after that fibroids started to grow at a fast rate. The fact that you have a lump I'd request further investigation and fast - in fact, you possibly need an MRI in order to obtain a proper view on what's really going on. Good luck
Thanks very much for the advice - scan tomorrow. MRI next week. Gynaecologist also said I have fast growing fibroids. Hopefully not cancer but still not ideal
Don't think about cancer - don't give it life! You will be fine. 😀I've had to check my diet and cut down on a lot of sugar, pretty difficult when stressed about various conditions we suffer from daily. Good luck with the scan tomorrow.
Yes it was down to a large fibroid and my endometriosis as suspected. I can still feel the lump when I'm laid on my back, but have been told this is my fibroid. Scans don't always pick up on endo - have you been diagnosed with this?
Hi thanks for getting back to me, I’m glad you found an explanation and it was nothing too serious. Did you have any cysts along with your endometriosis? I haven’t been diagnosed but it is suspected, I have had clear scans but I know sometimes it won’t show on scans unless there are endometriomas.
Yes, I've had numerous cysts show up on scans over the years. It was a chocolate cyst that was found when I had a c-section for my first child that then led into further scans and tests for endo.
yes mine was 109 I went straight into panick mode turned out to b endometrioma on the ovary , please try not to send your self crazy like I did I know it’s easier said than done .
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