NEED TO TALK CA125 elevated

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

  • Hi Frankie77, Please try not too worry, I know its easy said but my CA125 has been up and down over the last few years, its went from 55 to 201, then back to 40! its all been down to my endo and my fibroids! If I get a bad flare up with my stage 3 endo then the CA125 shoots up! My GP has said its not an accurate enough test to diagnose cancer, in many cases it can be put down to other inflammations, esp Endo and Fibroids!

    Please try and relax a bit, I was the same as you the first time and made myself ill reading things online but speaking to others on Endo UK, I realised I was stressing myself for something that wasn't as worrying as I had imagined!

    Take care & you'll get lots of support here so don't worry!


  • Awww thank you so much for your reply, I've been trying to make sense of it all, I was in shock when I was told at first and I kept on detaching from everything around me, it was a horrible feeling, thank you for putting things into perspective for me. It's heart warming to realise that other people take the time and trouble to share their experiences which has greatly helped. So thank you for that, thank you so much xx

  • Hello Frankie77. Please don't panic. I remember googling CA125 and worried myself stupid. Mine was 70 at the start of my endo journey. That was 4 years ago now and I have had a rapid roller coaster ride with it which resulted in a hysterectomy a year ago. I had all the same thoughts that you have but please put your mind at rest , I had endometriosis which caused the elevation. Unfortunately when we research we tend to pick up on the worst case scenarios, it's not always a good idea. This horrible disease does play mind games with us . I never used to worry about aches and pains these days every twinge I get I'm searching but have to stop myself as I know I will become neurotic. A glass of red helps occupies my hand and calms me down , good excuse to pop the cork! Lol It's very possible that the endo has returned which won't show on a scan but if you cysts again then these will and this I'm sure will give an indication to the raised level. I have read stories with much higher readings due to the endo minx please rest easy and you're doing the right thing getting yourself checked out. Keep intouch to how you get on:) hugs J x

  • Thank you so much for your reply, reading other people's experiences helps me to get a handle on my emotions, in fact it has helped me greatly to hear first hand rather than just read information dotted around the internet as it feels like a minefield. Thank you for taking the time and trouble to reply, I am very reassured by everyone's replies. So thank you again xx

  • It's a pleasure. I have found a lot of comfort and support from this forum, I cried when I found it. People like me, understanding exactly how I felt, rationalising my out of control thoughts! It certainly grounded me on many occasions and took me away from Google!! Take care and keep posting its good to know how we all get along . Hugs Jane x

  • Hey frankie77 I hope the answers the lovely ladies gave helped relaxe u little bit...

    I went through more or less the same thing in March, I had a lump above my groin constant aches and pains, slight fever and an elevated ca125, I was actually told to expect the worst whilst they rushed me through X-rays ct scan blood tests and MRI.

    I remember the night after I had the ct scan I was so scared I couldn't sleep and had to tiptoe downstairs at 2 in the morning I was petrified BUT I am fine everything I had was down to endo, I had my lap early April and I am recovering well although I still get pain but that's to be expected.

    Please try not to worry, I wish I didn't because I got myself into a right state...

    If you need to talk we are here xxxx

  • Thank you for replying to my post, it really is a frightening time and feels so isolating, as I was trying to protect the knowledge from my daughters and my mother and other family members. I've sworn my husband to secrecy but at the end of the day it's difficult to get the right answers from a man who can have no experience of the pain and fear this condition instills in us. Yet I need to talk about it and you feel your hands are tied until you find a forum like this, which is wonderful because although none of us have met, I feel so comforted by everyone's words and I have to say thank you for that as it means such a lot xx

  • You are so welcome, I know how scary it is, I also didn't want my son to know so me and my husband tried not to talk about which of course made it so difficult for me because I couldn't talk about my feelings and how scared I was and it wasn't until afterwards that I realised how scared he was.

    I hope all our replies go somewhat towards making you feel a little bit more relaxed and that you know no matter what tomorrow brings you are never on your own.

    Good luck and let us know how you get on xxx

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