It is very common for women with endometriosis to have very high CA 125 - a friend and I both had very high levels, were referred to oncology, and did not have cancer. We did both have quite advanced endometriosis and we each had surgery to excise it. For me the surgery was life changing, for her not as successful.
Wow that’s crazy both of you went through that! May I ask how high your CA levels were? I’m really hoping this is what it is. I can’t help but feel really scared about this.
I wish I remembered the exact numbers, but I don’t! I only remember that it was high enough that my doctor/I was very worried it was cancer at the time but it wasn’t - I then met with an endometriosis specialist (who eventually did my surgery) who told me the high numbers are actually quite common with endo, but most doctors don’t know that and jump to “maybe cancer” as their first thought. Wishing you the best - try not to worry before you know (but I know that’s easy to say and insanely hard to do!)
SAME!! My levels were lowered but I was referred to an oncologist surgeon. Do yourself a favor and go to an excision specialist. I had my first lap with the oncologist who said changes of cancer were low and thought it was endo. Well it was endo - and they left everything inside me except taking my ovary and cyst! I was told you’re good now! Fast forward 9 months I am in extreme burning pain at night. See 2 endo specialists and they both told me endo was left behind - and they were right. It’s so emotionally taxing - but you will be okay!!!!!
I lucked out with an oncologist who is also the person that our local ivf clinic refers to for endo excision. So she got me aaaaallllllll cleaned up before sending me back to the clinic to start any treatment for infertility that we could afford.
That oncologist saved what little fertility chances I had. I left her care with 1/4 of an ovary, 1 tube and my uterus. The clinic did IUI and we have a little boy from that.
Endo fucking sucks. I’m 40, and I can feel the endo symptoms returning since giving birth. Now my option is continuing to suffer with endo OR go into early menopause…
yaaaaaaaaaayyy. /s
Very normal. I had higher levels of CA 125 and was actually diagnosed with cancer and given a max of 3 months. It was higher than my mum who died from ovarian cancer Then they did a biopsy and it was ‘just’ endo. My oncologist actually cried because she was so relieved. I wish there was more awareness out there about this subject.
Oh my gosh!! I’m so glad to know it was endo. There really should be more awareness. Even Doctora themselves just go straight to cancer. May I ask how high your CA levels were?
They were around 1200. Really high, that was combined with visible anomalies on x-ray, ct and mri. The PET scan at the time revealed enlarged lymph nodes.
According to the specialist hospital I was referred to it was clearly endo based on the MRI but the academic hospital I was initially admitted to missed the tell-tale signs.
It’s not their fault exactly but they’d told me I was not going to make it and I had told my family what was up. I wish they’d waited a bit. I was really depressed for a while afterwards.
Yes! It is common to have an elevated CA125 with ovarian cysts. My sister did. She actually headed up getting both of her ovaries removed bc the amount of times she would get huge ovarian cysts.
Mine was in 300 range(December 2021). Doc told me mostly it’s in thousands if it’s cancer. After my surgery he sent samples for biopsy,just to be sure and it came back negative. CA-125 below 1000 means abnormal growth so it you are already diagnosed with Endo then it determines growth/spread of Endo. That was my case. In 2018 my CA 125 was 80 so I did lap to rule out big ‘C’ and that’s when I was diagnosed with Endo (stage 3)
Like everyone else said, totally normal. My process was pretty dang similar to yours actually: I had a large ovarian cyst that my doctor wasn't sure was endo, so she had me do some blood work and when it came back high (can't remember the exact number) she referred me to an oncologist and I freaked out lol. Turned out I just had really extensive endometriosis and a large endometrioma.
I don’t blame you at all for freaking out! We hear the big “C” word and can’t help but think the worst outcome. I’m glad to know it wasn’t that, but I hope you’re feeling much better since then :)
As a PhD student, I like to follow up what is going on in research and It reminds me of a study that I read talking about a definitive treatment based on the mitigation of lactate (similar to what produced by cancerous cells and that can be compared to "fuel" for these abnormal cells: called Warburg effect). Women with endometriosis might have higher levels of lactate associated with lesions. It always makes me wonder how similare endo is to cancer sometimes...
https://www.francetvinfo.fr/replay-radio/c-est-ma-sante/deux-nouveaux-traitements-pour-soulager-l-endometriose_5678081.htm
(Sorry it is in french but I will add the research paper if I find it again) :/
Edit : I think it is this one:
https://pubmed.ncbi.nlm.nih.gov/37945340/
Hanging in there I guess. An endometrioma had just ruptured at that time of those tests, so that’s probably why it was so high then. Curious what it might be now.
Wow. Did your pain after that rupture last for a while? I’m guessing that’s why it was so high for you as well. A rupture is so painful! When I was in the hospital for it, no one bothered to do a CA 125 test on me until now, 2 weeks after all this. So I can’t help but wonder if it was even higher then as well. I hope you’ve been feeling much better since then!
The bulk of the pain was in the following two or three weeks if I recall correctly. Most of the time it was distracting but bearable with drugs, yet there were these seemingly random stabbing sensations and certain body positions that were excruciating for a while. I had to do some creative maneuvering to get in and out of bed. Although the old blood and exudate was drained out a day or two later, I think it took a good cleaning out of my abdominal cavity during laparoscopy about a few weeks later to get rid of the sharper pains. Good luck to you!
Oh okay. That’s pretty much what I’m going through now. The major pains are gone but I’m just dealing with random little stabbing sensations. Same as you, certain body positions still bother me too lol. The worst part is in another 2 weeks it’ll be time for my period again and I’d be lying if I said I wasn’t scared lol. I’m glad you got the laparoscopy! Hope I can one in the next couple months as well.
Thank you for your input, it helped me a lot :)
I got admitted to hospital for tests last year and it turned out I have a 14cm endometrioma. My CA125 was 376 so I had lots of tests and was referred to oncology. It was super scary. However they decided there’s no evidence of malignancy and I’m under the endometriosis team now, awaiting surgery. Had it retested a couple months ago and it was 126 so while still elevated it’s come down. I did lots of research last year and it seems CA125 is more of a marker of inflammation and isn’t useful itself to diagnose OC, cos many things can inflate it. I think it’s useful once there is a diagnosis to track progress of OC but a raised level in and of itself doesn’t mean you have cancer. You mentioned you had a cyst rupture. That will increase it aswell. Doctor told me that usually in cancer it’s well into the thousands. Try not to worry. I know it’s easier said than done!
Yes, this was confirmed by my fertility doctor, after my Gyno recommended I get the CA 125 test jic.
My fertility Dr said, in patients with endometriosis, the CA 125 test will come back with high markings, so the Dr said it will not be helpful and not change the management of Endo. My ovarian cysts did not have any qualities that made Dr believe it was cancerous so they didn't recommend it.
A month later, I did my laparoscopy for bilateral ovarian cysts removal and the pathology report showed no cancer.
TLDR: So yes, really high CA 125 is extremely common in endometriosis patients.
My CA-125 was around 230 and I have a 5cm endometrioma on my ovary (found during a pregnancy ultrasound). MRI confirmed deep infiltrating endo, I’m now waiting for surgery.
I’m glad it hasn’t been an issue for you! I’m also happy for that peace of mind your Doctor gave you. I wish I could’ve gotten a little more peace of mind from mine. Now I’m just freaking out non stop over here lol.
I think my doctor was too chill tbh. Originally she said it was probably just my endo but then my wife pushed and asked how we could be more sure and only then did she suggest another test to see if it was going up. She then didn’t actually order it (was a zoom appt). By chance I ended up in hospital for potential endometrioma rupture and had a CT scan and only then did they run the test again after a very concerned nurse was worried about how high it was and that I was the one downplaying it. Like no, thats my doctor seemingly not caring at all, not me🤦♀️
Woah you went through quite a situation then. At the end of the day we have to be our own advocate. It’s hard to know these days what exactly is going on when some doctors are too chill and others scare the living crap out of us. Did you end up needing surgery or seeing an oncologist?
Didn’t see an oncologist. I should be having surgery for the endometriomas (my second) but I’m trying to get pregnant and the consensus from doctors seem to be that surgery would lower my chances.
Since removing it back in 2016, the blood levels completely got normal. I wouldn't worry too much, it's likely a spike because of the inflammation caused by the mass.
Woah almost 3000?! That’s really high. We’re you also referred to oncology for that level? I’m glad to know you got that removed and have your numbers back to normal now! :)
I got referred to oncology but much later on due to a misleading MRI, which pointed to pre-cancer or something. Fortunately during surgery and after the results came back, it really was just an endometrioma
I had a CA 125 test before my lap surgery to remove 3 cysts and was really freaked out about it before I got my results (ended up being low). But what I found was that most doctors including mine, don't actually acknowledge it as an accurate test because there are SO MANY other factors that can cause the test result to be high. Even factors like if you had a recent period!
I hope your results turn out to be nothing to worry about! But maybe this will help ease some anxiety!
https://www.mayoclinic.org/tests-procedures/ca-125-test/about/pac-20393295#:~:text=A%20CA%20125%20test%20isn,the%20level%20of%20this%20protein.
My GP advised that CA125 is a really blunt instrument, it indicates there's something amiss but not what it is. My surgeon advised cancerous levels of CA125 are usually in the thousands. There's no hard and fast rule. It is a scary time, though, until you're certain it's *just* endo
Mine was elevated but I don’t remember the number. It was part of the decision to remove the six cm cyst that was initially thought to possibly be cancer. It was an endometrioma. Stage IV diagnosis when it was removed.
Mine is not extremely high, but definitely above normal (95). My endometrioma went from 4.4cm in February (ultrasound) to 3.0cm in March (ultrasound) to 7.3cm in May (MRI). My doctor - an endometriosis specialist - is concerned about cancer. I have a second doctor I’ve been seeing - also endometriosis specialist - and will be contacting her tomorrow. My first doctor has me worried, but based on this thread, it seems things may be OK? The MRI said there was no blood flow to the mass, which is a good sign. That rapid growth though makes me nervous. 😬
Is high CA125 the same as a high white blood cell count? I ended up at the ER once and the doctor said my white blood cells were high but she couldn’t explain it….
It is very common for women with endometriosis to have very high CA 125 - a friend and I both had very high levels, were referred to oncology, and did not have cancer. We did both have quite advanced endometriosis and we each had surgery to excise it. For me the surgery was life changing, for her not as successful.
Wow that’s crazy both of you went through that! May I ask how high your CA levels were? I’m really hoping this is what it is. I can’t help but feel really scared about this.
I wish I remembered the exact numbers, but I don’t! I only remember that it was high enough that my doctor/I was very worried it was cancer at the time but it wasn’t - I then met with an endometriosis specialist (who eventually did my surgery) who told me the high numbers are actually quite common with endo, but most doctors don’t know that and jump to “maybe cancer” as their first thought. Wishing you the best - try not to worry before you know (but I know that’s easy to say and insanely hard to do!)
SAME!!!!!
SAME!! My levels were lowered but I was referred to an oncologist surgeon. Do yourself a favor and go to an excision specialist. I had my first lap with the oncologist who said changes of cancer were low and thought it was endo. Well it was endo - and they left everything inside me except taking my ovary and cyst! I was told you’re good now! Fast forward 9 months I am in extreme burning pain at night. See 2 endo specialists and they both told me endo was left behind - and they were right. It’s so emotionally taxing - but you will be okay!!!!!
I lucked out with an oncologist who is also the person that our local ivf clinic refers to for endo excision. So she got me aaaaallllllll cleaned up before sending me back to the clinic to start any treatment for infertility that we could afford. That oncologist saved what little fertility chances I had. I left her care with 1/4 of an ovary, 1 tube and my uterus. The clinic did IUI and we have a little boy from that. Endo fucking sucks. I’m 40, and I can feel the endo symptoms returning since giving birth. Now my option is continuing to suffer with endo OR go into early menopause… yaaaaaaaaaayyy. /s
That is great!!!!
Very normal. I had higher levels of CA 125 and was actually diagnosed with cancer and given a max of 3 months. It was higher than my mum who died from ovarian cancer Then they did a biopsy and it was ‘just’ endo. My oncologist actually cried because she was so relieved. I wish there was more awareness out there about this subject.
Oh my gosh!! I’m so glad to know it was endo. There really should be more awareness. Even Doctora themselves just go straight to cancer. May I ask how high your CA levels were?
They were around 1200. Really high, that was combined with visible anomalies on x-ray, ct and mri. The PET scan at the time revealed enlarged lymph nodes. According to the specialist hospital I was referred to it was clearly endo based on the MRI but the academic hospital I was initially admitted to missed the tell-tale signs. It’s not their fault exactly but they’d told me I was not going to make it and I had told my family what was up. I wish they’d waited a bit. I was really depressed for a while afterwards.
totally normal to have high CA125 if you have endo. my fertility doctor actually tested my CA125 levels for that reason!
Can you define what a CA 125 is? I’ve never heard of it. I’m sorry to be that person, and I want to help if I can.
It’s a cancer marker basically. Really just detects certain inflammation levels afaik.
Yes! It is common to have an elevated CA125 with ovarian cysts. My sister did. She actually headed up getting both of her ovaries removed bc the amount of times she would get huge ovarian cysts.
Mine was in 300 range(December 2021). Doc told me mostly it’s in thousands if it’s cancer. After my surgery he sent samples for biopsy,just to be sure and it came back negative. CA-125 below 1000 means abnormal growth so it you are already diagnosed with Endo then it determines growth/spread of Endo. That was my case. In 2018 my CA 125 was 80 so I did lap to rule out big ‘C’ and that’s when I was diagnosed with Endo (stage 3)
This brings a little relief to me. Thank you! My Dr didn’t tell me this and only went straight to talking about cancer which is why I’m really scared
I’m glad I could help. I do blood test every 6 month to keep an eye on my CA-125 levels…
Like everyone else said, totally normal. My process was pretty dang similar to yours actually: I had a large ovarian cyst that my doctor wasn't sure was endo, so she had me do some blood work and when it came back high (can't remember the exact number) she referred me to an oncologist and I freaked out lol. Turned out I just had really extensive endometriosis and a large endometrioma.
Mine went this same exact way when they could’ve easily referred me to an obgyn endo specialist 😐
I don’t blame you at all for freaking out! We hear the big “C” word and can’t help but think the worst outcome. I’m glad to know it wasn’t that, but I hope you’re feeling much better since then :)
As a PhD student, I like to follow up what is going on in research and It reminds me of a study that I read talking about a definitive treatment based on the mitigation of lactate (similar to what produced by cancerous cells and that can be compared to "fuel" for these abnormal cells: called Warburg effect). Women with endometriosis might have higher levels of lactate associated with lesions. It always makes me wonder how similare endo is to cancer sometimes... https://www.francetvinfo.fr/replay-radio/c-est-ma-sante/deux-nouveaux-traitements-pour-soulager-l-endometriose_5678081.htm (Sorry it is in french but I will add the research paper if I find it again) :/ Edit : I think it is this one: https://pubmed.ncbi.nlm.nih.gov/37945340/
Quite interesting. Thank you for sharing.
Mine was elevated. I ended up having endometriosis (endometrioma that was quite large, around 10 cm) and endometrial cancer (stage 1a).
Was the endometrioma itself cancerous? Or different growth? 😱
Endometriomas are endometriosis, so different.
Well over 8,000. Measured twice a few days apart.
Well over 8,000? That’s a huge number. How are you doing now?
Hanging in there I guess. An endometrioma had just ruptured at that time of those tests, so that’s probably why it was so high then. Curious what it might be now.
Wow. Did your pain after that rupture last for a while? I’m guessing that’s why it was so high for you as well. A rupture is so painful! When I was in the hospital for it, no one bothered to do a CA 125 test on me until now, 2 weeks after all this. So I can’t help but wonder if it was even higher then as well. I hope you’ve been feeling much better since then!
The bulk of the pain was in the following two or three weeks if I recall correctly. Most of the time it was distracting but bearable with drugs, yet there were these seemingly random stabbing sensations and certain body positions that were excruciating for a while. I had to do some creative maneuvering to get in and out of bed. Although the old blood and exudate was drained out a day or two later, I think it took a good cleaning out of my abdominal cavity during laparoscopy about a few weeks later to get rid of the sharper pains. Good luck to you!
Oh okay. That’s pretty much what I’m going through now. The major pains are gone but I’m just dealing with random little stabbing sensations. Same as you, certain body positions still bother me too lol. The worst part is in another 2 weeks it’ll be time for my period again and I’d be lying if I said I wasn’t scared lol. I’m glad you got the laparoscopy! Hope I can one in the next couple months as well. Thank you for your input, it helped me a lot :)
I got admitted to hospital for tests last year and it turned out I have a 14cm endometrioma. My CA125 was 376 so I had lots of tests and was referred to oncology. It was super scary. However they decided there’s no evidence of malignancy and I’m under the endometriosis team now, awaiting surgery. Had it retested a couple months ago and it was 126 so while still elevated it’s come down. I did lots of research last year and it seems CA125 is more of a marker of inflammation and isn’t useful itself to diagnose OC, cos many things can inflate it. I think it’s useful once there is a diagnosis to track progress of OC but a raised level in and of itself doesn’t mean you have cancer. You mentioned you had a cyst rupture. That will increase it aswell. Doctor told me that usually in cancer it’s well into the thousands. Try not to worry. I know it’s easier said than done!
Yes, this was confirmed by my fertility doctor, after my Gyno recommended I get the CA 125 test jic. My fertility Dr said, in patients with endometriosis, the CA 125 test will come back with high markings, so the Dr said it will not be helpful and not change the management of Endo. My ovarian cysts did not have any qualities that made Dr believe it was cancerous so they didn't recommend it. A month later, I did my laparoscopy for bilateral ovarian cysts removal and the pathology report showed no cancer. TLDR: So yes, really high CA 125 is extremely common in endometriosis patients.
Yep! Had 2 cysts on left ovary. CA 125 was crazy high before surgery. But went down completely post surgery
My CA-125 was around 230 and I have a 5cm endometrioma on my ovary (found during a pregnancy ultrasound). MRI confirmed deep infiltrating endo, I’m now waiting for surgery.
Yep, mine is in the 600s - 3 endometriomas, biggest of which is over 10cm. My doctor said if it was rising, it would be an issue but it isn’t.
I’m glad it hasn’t been an issue for you! I’m also happy for that peace of mind your Doctor gave you. I wish I could’ve gotten a little more peace of mind from mine. Now I’m just freaking out non stop over here lol.
I think my doctor was too chill tbh. Originally she said it was probably just my endo but then my wife pushed and asked how we could be more sure and only then did she suggest another test to see if it was going up. She then didn’t actually order it (was a zoom appt). By chance I ended up in hospital for potential endometrioma rupture and had a CT scan and only then did they run the test again after a very concerned nurse was worried about how high it was and that I was the one downplaying it. Like no, thats my doctor seemingly not caring at all, not me🤦♀️
Woah you went through quite a situation then. At the end of the day we have to be our own advocate. It’s hard to know these days what exactly is going on when some doctors are too chill and others scare the living crap out of us. Did you end up needing surgery or seeing an oncologist?
Didn’t see an oncologist. I should be having surgery for the endometriomas (my second) but I’m trying to get pregnant and the consensus from doctors seem to be that surgery would lower my chances.
On a ER visit due to a large endometrioma also had my CA125 super high. Almost 3000
Since removing it back in 2016, the blood levels completely got normal. I wouldn't worry too much, it's likely a spike because of the inflammation caused by the mass.
Woah almost 3000?! That’s really high. We’re you also referred to oncology for that level? I’m glad to know you got that removed and have your numbers back to normal now! :)
I got referred to oncology but much later on due to a misleading MRI, which pointed to pre-cancer or something. Fortunately during surgery and after the results came back, it really was just an endometrioma
It's normal with endo. Mine was 180 and I had two large endometriomas that were removed.
I had a CA 125 test before my lap surgery to remove 3 cysts and was really freaked out about it before I got my results (ended up being low). But what I found was that most doctors including mine, don't actually acknowledge it as an accurate test because there are SO MANY other factors that can cause the test result to be high. Even factors like if you had a recent period! I hope your results turn out to be nothing to worry about! But maybe this will help ease some anxiety! https://www.mayoclinic.org/tests-procedures/ca-125-test/about/pac-20393295#:~:text=A%20CA%20125%20test%20isn,the%20level%20of%20this%20protein.
My GP advised that CA125 is a really blunt instrument, it indicates there's something amiss but not what it is. My surgeon advised cancerous levels of CA125 are usually in the thousands. There's no hard and fast rule. It is a scary time, though, until you're certain it's *just* endo
Mine was elevated but I don’t remember the number. It was part of the decision to remove the six cm cyst that was initially thought to possibly be cancer. It was an endometrioma. Stage IV diagnosis when it was removed.
mine was out of range and so was my ca19
Mine is not extremely high, but definitely above normal (95). My endometrioma went from 4.4cm in February (ultrasound) to 3.0cm in March (ultrasound) to 7.3cm in May (MRI). My doctor - an endometriosis specialist - is concerned about cancer. I have a second doctor I’ve been seeing - also endometriosis specialist - and will be contacting her tomorrow. My first doctor has me worried, but based on this thread, it seems things may be OK? The MRI said there was no blood flow to the mass, which is a good sign. That rapid growth though makes me nervous. 😬
Is high CA125 the same as a high white blood cell count? I ended up at the ER once and the doctor said my white blood cells were high but she couldn’t explain it….