stable but raised ca125

[JS1001]

I had my ca125 tested when I was 21 due to a persistent dull ache in my lower left abdomen and it came back at 35, so borderline, I had a clear scan back then too so my doctor was happy to leave it.

I’m now 26, and my doctor tested my ca125 due to some bowel changes and that same ache I had at 21. These have once again resolved however they have been coming and going over the past 5 years.

The results came back that I have had a raised ca125 of around 50, repeat testing shows that this has remained stable for the past 10 months, increasing slightly when on my period but coming back down to 50.

I have had two normal ultrasounds along with a CT scan that showed only a small functional cyst of around 2 cm, which has since resolved itself and a hysteroscopy which was normal aside from a very small polyp that was removed at the time.

I know this blood test can sometimes be raised in people with endometriosis, and my gynaecologist said it was a possibility, but the only way she would be able to diagnose is a laparoscopy, which she doesn’t feel is necessary due to my lack of symptoms and clear scans. So I am currently left with elevated ca125 and a huge amount of uncertainty.

I have been doing some research and I am failing to find anyone with raised levels caused by endometriosis, who also had normal scans, without endometriomas etc.

I do have painful periods but only for the first day along with changes in bowel movements and quite large clots. When I get overly stressed I get this dull ache in my lower left abdomen, but as described above this has been the case for years.

honestly I’m just looking for experiences where people had similar levels and clear scans and ended up with something less scary than the big C.

Thank you xx

[Rainbow2468]

Hi mine was 50 and I've had one ultrasound consultant and three gynecologist's tell me it's nothing to worry about. It's only serious if it's in the thousands, as I was told by a senior gynecologist. Endometriosis, adenomyosis, periods, cysts and fibroids can cause a raised level. I totally understand why you are worried and I hope my reply helps put your mind at rest. Sending you a big hug hope you have a lovely day x❤️

[JS1001 in reply to Rainbow2468]

Thank you so much for your reply. I’m glad everything turned out ok for you. Did your ultrasound come back clear? Did you ever get your levels retested after the first time? Thanks again for the reassurance , I was really getting myself into a dark place over this test xx

[Rainbow2468 in reply to JS1001]

Hi no I've not had further ca125 tests. They found cysts, signs of endometriosis, adenomyosis and fibroids,during my ultrasound, I was ultrasound scanned recently, and thankfully the cysts have gone. The consultation who did my scan said it annoys her that do ca125 tests on pre menopausal women are they just scare them. Glad I've been able to help. I would have been the same as you. Last year they did two lots of cervical and endometrial biopsies I was so stressed waiting for the results. X

[JS1001 in reply to Rainbow2468]

They haven’t found any signs of anything on my ultrasounds unfortunately, which should be a positive but it’s causing worry with the raised levels. They did find a very small 1 cm fibroid which my consultant said wouldn’t have caused the rise.

I’m 26 so she also wasn’t too happy about the test being done. But she said since it was done and the levels are raised we have to monitor, so I will be having another ultrasound in a few months.

[G3miniStar]

I had a CA125 level of 63 I believe, which is actually along with period problems (my cycle was getting longer) the very first reason I was given further testing that found my endo. Unfortunately from my understanding the amount of endo doesn't seem to correlate very well with the level of pain someone has though. I've been told twice now I'm not in the amount of pain they would expect someone with my level to be in so I'm incredibly lucky.

Your symptoms could be caused by the tiniest amount of endo or fibroid or it could be the opposite, but in either situation it's missed because the scans are not being looked at by the right person. Also I'd also say to make sure you have a recent smear test to make sure that is clear too.

Keep pushing, get a second opinion if you can, keep fighting for yourself! x

[JS1001 in reply to G3miniStar]

Hi! Thank you for your comment, I’m glad that you haven’t been suffering too much pain with your endo. Can I ask how yours was diagnosed? Did they see any evidence in scans? I am all up to date with smears and also had some endometrial biopsies which were all clear.

[G3miniStar in reply to JS1001]

Mine was diagnosed by lap but they only did it because I had huge endometrioma cysts (about 10cm) on each ovary. They didn't initially think they were endo cysts so my consultant was a bit like "we'll do a surgery, you might not need it and I might get in there and your cysts have gone by themselves" and then he got in and found my insides all stuck together lol. The only evidence of the endo they found before this was my ovaries didn't move when poked during the ultrasound as they were stuck to my uterus - did they poke around during yours at all?

Could you also ask your consultant for an MRI? Though with MRI it does depend on the skill of the radiologist to spot endo, so again it *might* not show if they don't know what they're looking for unfortunately but it's another avenue for diagnosis.

Btw I also don't agree with your doctor being reluctant because of your age. I know so many women have had endo diagnosed and treated younger than you. Yes there is a minor risk to your future reproduction but so is leaving endo undiagnosed.

[JS1001 in reply to G3miniStar]

Ah I see, it seems that everyone with a ca125 caused by endo seems to also have endometriomas.

I don’t think they checked the movement of my ovaries during mine. I am having another ultrasound in a few months so I will mention this then.

Yeah I have seen a few people be diagnosed with and MRI so that could be an option rather than surgery. My doctor is reluctant to do the exploratory lap on the basis of only a raised ca125 as she feels my risk of it being caused by ovarian cancer is low due to my clear scans. She did mention the possibility of endo but doesn’t think a lap is needed at this time , I wish she would just do it if I’m honest. I just want to know what is going on.

[G3miniStar in reply to JS1001]

I think there is definitely a few different reasons it can be raised, I think people with PCOS or Adeno have raised CA125 too. Have you had the day 2-5 and day 21 blood tests to get a baseline for your hormones along with the CA125?

Laps are horrible things to have, I've had three in the past four years and they do take their toll. I do understand why you're pushing for one though as scans are only as good as the person looking at them.

Could you pay privately to see an endo specialist for a second opinion? The heads of the BSGE centres usually also do private work. That's how I found my consultant who I trust and has done two of my surgeries and he's brought me over to his NHS clinic too. If you do this make sure you do a Subject Acces Request for copies of everything your current doctor has done including scans so they have the full picture.