High CA125

[SL1976]

Hi everyone. Hoping I can get some insight. I have had abdo and lower back pain for a while now with changes in bowel habits. Had bloods done and CA125 came back as 164 which is obviously quite high. US showed ovaries are normal size. Bloods were repeated a week and a half later and the marker has risen to 215. Now I have known fibroids and this could raise it and am waiting for a CT scan to completely rule out OC. Has anyone else had an experience like this?

[N-A-58]

Similar to my mum. The CT came back clear also. They said because she was 60 she could repeat bloods every 3 months or have laparoscopic surgery to remove ovaries and tubes because she had been through the menopause. She chose the surgery and it was stage 3 ovarian cancer.

I don’t say this to scare you but so that you can keep advocating for yourself. OC can be very sneaky.

I hope it’s nothing for you. But keep pushing for answers.

[SL1976 in reply to N-A-58]

Thank you N-A-58. Yea I have really had to push hard for a CT scan. I am 47 and my opinion is that if it is the worst, best sorted earlier. I have had the pain for over a year thinking it’s hip pain and it still could be but I do want a definitive answer. GP asked gynae for advice and they said it was fibroids without even looking at my US. Thanks for your comments. I am doing the right thing pushing and just needed some confidence that I am doing the right thing.

[SuffolkJen]

I agree with N-A-58 you need to keep pushing for a definitive answer.

I had a single post menopausal bleed (57) no pain, bloating, or any other OC symptom . My CA125 was raised at 76. MRI scan indicated a fibroid, MDT thought it was a fibroid but as I had lost my mum to OC I opted to have full surgery.

3 weeks after surgery pathology showed it was in fact clear cell OC stage 1a.

I’m not saying this to scare you, as like you know a raised level can be for other reasons but it is soo important to be 100% sure your rising CA125 is not because of OC.

Good luck xx Jen

[SL1976 in reply to SuffolkJen]

Thank you. Yes when a doctor says they can’t be 100% sure it’s not OC then I do want further scans. As I said in the first post reply, I am 47 and my opinion is that if it is the worst, best sorted earlier. I have had the pain for over a year thinking it’s hip pain and it still could be but I do want a definitive answer. GP asked gynae for advice and they said it was fibroids without even looking at my US. Thanks for your comments. I need to keep pushing. If the numbers were slightly raised I probably wouldn’t have worried but given the back pain, bloatiness etc it does need checking.

[SuffolkJen in reply to SL1976]

No one should have pain for a year without knowing what it is 🤦🏼‍♀️. You definitely have the right approach, don’t feel like a nuisance or anything else this is your life. Many people on this site have been let down initially when seeking help. I wasn’t I just made a call to GP she put me on 2ww and the rest followed, I thought it was like that for everyone but experience has taught me differently.

[SL1976 in reply to SuffolkJen]

I had a knee op in December so thinking it was hip pain down to perhaps not walking properly. But knee got better and the pain hasn’t gone. The doc said because the US was clear she couldn’t put mr on 2ww but after the marker was raised further on the second blood test, she said it should be checked. I have really had to push. Given how awful this can get if left too long, I will continue to push.

[SuffolkJen in reply to SL1976]

Good for you. Let us know how you get on. I really hope it’s all good xx Jen

[SL1976 in reply to SuffolkJen]

Thank you. Let’s hope it is my hip and the marker is just down to fibroids I know I have. Scan on Tuesday so I guess a few weeks before getting the results. Will let you know. Thank you again for replying to my post x

[Jazmin222]

Back pain/fatigue were my main symptoms and slightly elevated ca125 of 69. It was OC - clear cell stage 1A. However it was visible on an ultrasound, professionals became even more sure after MRI…then a CT (almost definitely said it looked like cancer). I’d ask for a MRI or a CT. Sometimes ovaries are hidden and can’t always be seen or are stuck to other organs (I had that!) I was 49 when all these tests were happening and 50 when it was confirmed. I really hope your outcome is different but you are right to be concerned and do get the reassurance you need. Early detection is so important.

[Doggies221 in reply to Jazmin222]

Hi Jazmin, so glad you are ok now. It seemed you experienced pregnancy at some point? Was it before or after the cancer diagnosis?

[Jazmin222 in reply to Doggies221]

I was pregnant in 2019 and gave birth in august 2020. My cancer diagnosis was April 2024 …. But the back pain really started after my c-section …. I’m not sure when the cancer started but …. my gut feel is that it was Dec 2021 onwards it was growing ….(weirdly after a bout of a covid left me sick for months and I had raised levels of inflammation in the body…. I think that was the start…)

[Doggies221 in reply to Jazmin222]

Thanks for sharing. They say that pregnancy protects from OC development but pregnancy may not slow down endometriosis and endo is the precancerous lesion for clear cell so even women with children might develop clear cell from endo 😑. Hope you’re ok now.

[SL1976]

Thanks Jazmin222. Given my numbers have been 164 and 215 on the first and second bloods I am a bit concerned. As I said I can understand that it can be due to fibroids but with the other symptoms I have to be sure. I hope CT on Tuesday provides some answers. Thankyou for commenting.

[Hidden]

hey

I had something similar but they told me if your ultrasound scan is normal it is highly unlikely to be OC. So I hope that’s reassuring for you. I was also asked to repeat my bloods but I’m to scared to as it gives me horrible anxiety. However, many things raise ca125 it is a non specific blood test. It could be endo, fibroids etc

[SL1976]

Thanks Nazzy14. I suspect it will be nothing but it’s not always the case if the US is clear then it should be nothing. But generally it is the case. With the other symptoms it’s best to check, also given the blood test was higher than the first. But yes probably nothing. I’d rather be a bit neurotic now and make sure it’s defo nothing than it be too late if the worst happens. Thanks for commenting. Appreciate your thoughts x

[Hidden in reply to SL1976]

Definitely I agree ! Good luck