Need some words of comfort CA125 = 65

Hello, I wonder if anyone has had any similar experience of this. Here's a little medical history: I am 51 and a year ago had a laparoscopy for a chocolate cyst removal and endometriosis clean up, I was found to have fibroids which the consultant said were only small, so they were left alone. My heavy periods improved slightly and the pain slightly more easy to deal with at the time of the month. Lately though the pain has increased, and not only have I been having pain on my period but also on and off in between over two months, this is also when I've noticed a hard lump on my cervix appeared, I thought it went away, in between the last two periods, so didn't go to the GP, then it's appeared again (if at all it did go away, I may have imagined it had). I ended up going to the GP about three weeks ago because of the niggling pain I was having between periods, so he ran a full blood test, everything was ok EXCEPT the CA125 test, which tests a biomarker for ovarian cancer, my levels were 65, up to 35 is normal, I am now extremely worried. However, I have read that this is an unreliable test on it's own as it has a rate of 80% false positives, and other benign conditions also cause elevated CA125 levels, such as Endometriosis, Cysts and Fibroids even normal Menstruation. All the other tests he expected to be out of kilter to do with ovarian cancer seemed ok, he said he would have expected other things to have shown. I am very confused and I am hanging onto this positive sign as I've had all three conditions endo. fibroids, cyst (removed) and I have been having odd menstruation for two months, which I thought was the menopause. It's just that the GP has called for an urgent scan, he didn't know about the cervical lump either, the whole thing has unnerved me, I'm on here every night and researching positive remarks on the subject, it's bothered me also that raised CA125 can be as a result of other cancers too. I know that the best thing I can do is now to have the urgent scan and pursue the problem if there is one. It's just that my mind is leap frogging all over the place with anxiety, one minute I feel I can rationalise it, the next I feel a panic attack coming on, I'm trying to keep busy and think positive thoughts. Please can anyone identify with this, just to chat about it would be comforting, as I have only told my husband and told him not to tell our grown up daughters or mum as I don't want them to worry unnecessarily, I couldn't cope with them worried sick, especially if everything turns out to be nothing to worry about. Please could I just have a comforting chat with someone about this. Thank you xxxx

8 Replies

  • Hello

    I'm sorry to read you are having problems at the moment.

    CA125 levels are usually raised with us ladies that have Endo. Unfortunately

    that doesn't stop us worrying though!

    Your scan will show if there is anything on your ovaries. Unfortunately, chocolate cysts often grow back and can cause so many problems. They really are a nuisance. Your GP sounds really understanding and is doing the right thing in referring you for an urgent scan. I think it be be reasonable for you to also ask for a referral to a gynae again.

    The lump on your cervix could be a polyp. A non cancerous tumour which are relatively common. The polyp wouldn't disappear but your cervix may have changed position which would have made it difficult to detect. This definitely needs mentioning to your GP.

    Are your smears up to date?

    I understand why you do not want to worry your daughters and your Mum... But I'm sure they would want to offer you support and comfort.

    This forum is great for support and we even have a laugh sometimes. I even arranged a cyber party on Friday

  • Thank you so much for your reply it is so comforting to get some perspective on this worrying, I am feeling much more positive now thank you xx

  • Hi, I was seriously ill 4 years ago due to endometriosis, all my internal organs were crushed due to ascites. I had blood tests and my CA125 was at 80, I was told that they thought I had a rare cancer called pseudo myxoma peritonii. Anyway after more tests and blood tests the endometriosis was diagnosed and the consultant told me that sometimes CA125 levels can rise due hormones etc. I know this probably won't stop you worrying about it but hope it helps x

  • Thank you for your reply everything you have said has helped me to get my feet back down on the ground again and feel more optimistic instead of panicking, so thank you xx

  • Hi I am sory to hear you are having such a tough time and completely understand why you are so worried.

    I can only say that I had a series of raised CA125 results (went from about 60 to about 95ish I think) and it was linked to the inflammation from endo and a chocolate cyst. My gynae said that the CA125 is a measure of inflammation inside the abdomen so can be raised in many things. I sincerely hope that your scan comes through quickly and you can start to get some answers. Best wishes.

  • Thank you so much for your reply, I think the endometriosis is flaring up again as this is much the same pain I experienced before the laparoscopy, I am so reassured by yourself and people like you that the raised CA125 levels are linked so strongly to endo. I am starting to feel so much more positive and coming back down to earth again, Thank you once more xx

  • Try not to worry. Easier said than done I know. My CA-125 was over 600 before my last surgery in August. I dunno why they test it in women with endo as it just causes extra stress.

  • I think this is another case of a lot of false positives, I know blood tests are important but some are so vague and unreliable it does set you off thinking the worst unnecessarily. I am so relieved and heartened by people's support and words of comfort and this has helped me a lot, so thank you for taking your time to reply xx

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