Raised ca125

[Kittycat24]

I went to a&e with stabbing pain in my right lower side last October and suspected appendicitis. Blood test was clear and examination ruled it out. I was referred for an ultrasound which took place in December. Ultrasound and vaginal ultrasound were both clear. I bled lighly/spotted for several days following the vaginal ultrasound and contacted my doctor. He sent me for swabs, blood test and urine sample. Everything clear apart from ca125 has come back high at 98.5. I had a phoncall from a GP to say I had been fast tracked under 2 week wait to gynaecology. The letter says suspected gynaecological cancer. I don't understand as my scans were both clear. I'm in absolute panic at the moment. I was on my period when blood test was taken and wonder if this could have elevated my ca125 number. Doctor has agreed to me having bloods taken again but this won't be until next week now. I'm spending all my time worrying 😔

Try not to worry too much. I had this a few years ago and my GP was fab at explaining why I shouldn’t be worried, but she wanted to explore more thoroughly, so I was put on the two week pathway and had a morning at hospital having all the investigations you’ve had, plus a hysteroscopy which all came back clear.
You can have a raised CA125 from any pelvic inflammation, even IBS and your period can cause it to rise. The fact that your scans etc have all come back clear bodes well. A CA125 is a poor indicator by itself, so is used with the other investigations to give a full picture.
Good luck!

Ah thank you so much for your reply, that is reassuring 😊

The last blood test I had for CA125 (I have had a few!) I was told not to book it for when I had my period as this could cause elevated levels. I had never been told this before so definitely worth noting.
Definitely do not worry until someone tells you that you have something to worry about!

I was like you when I was told about raised CA125 being a sign of ovarian cancer, but raised CA125 levels can also be an indication of fibroids. My level's high but scans found fibroids on the outside of my uterus and no sign of cancer.

Thank you so much for sharing your experiences. I'm booked in for repeat bloods and have an appointment for gynaecology too. Fingers crossed all is ok 🤞

I’m going through exactly the same. Nurse Practitioner ordered CA125 when I mentioned persistent diarrhoea which I believe is down to a change in medication. I really wish I hadn’t had the test as I was on my period and the results came back slightly high (48). I think the nurse is now panicking unnecessarily as she’s phoned me up and told me she suspects cancer and is making an urgent referral. However, I have had TWO normal ultrasound scans in the past two months! The last one was about five weeks ago. One was TV and the other was abdominal. Neither scan has shown anything other than a very small fibroid (1.5cm) on the outside of uterus. So this morning I’m phoning the hospital to cancel the urgent referral as the nurse hasn’t followed the correct protocol, she wasn’t even aware of the two previous scans. I’m then phoning the GP and asking for another TV scan and another CA125 when I’m not on my period. If the scan is clear and CA isn’t increasing then I’m satisfied. I certainly won’t be going back to see that nurse ever again. I think she’s overstepping her capabilities and is panicking now and making me worry unnecessarily. I have checked NICE guidelines and the next step after a raised CA125 is ultrasound and only refer if ultrasound shows signs of possible malignancy. The hospital would only repeat the same tests anyway unless something shown up from ultrasound and then would only investigate further if your risk of malignancy score is greater than 200, which mine isn’t, because both scans were clear.

Completely understand what you mean. I've just come back from my gyneacology appt. The lovely Dr didn't really understand why I was there, nor did I. He said he doesn't know why I've been tested for ca125 after clear ultrasounds. He said that it could definitely be raised due to being on my period and how it's not a useful test in younger/pre menopausal women (I'm 40) Some people have a naturally higher ca125 too. I had my bloods taken again and will get a phone call with the result. Alot of worry for nothing.

Did the gynaecologist do any other tests or just shrug shoulders and repeat blood test?

No other tests today, just blood. He said it would be pointless to do another ultrasound scan as the results were in front of him. If result comes back high again he said we will make a plan, possibly a different type of scan. He was very reassuring.

My ca 125 has now gone down to 47. It was 98.5 but I was on my period - So still higher than it should be but no obvious reason. Will be seen in clinic in 6 weeks and have bloods taken again and go from there.

That’s great news, thank you for sharing. Fingers crossed

I started ivf treatment so had a transvaginal scan 1st march and it showed small cysts, fibroids and small signs of edometriosis....a further aqua scan in May to see if the fibriods were in the way of the cavity....anyway all clear from the Dr, just to be aware. Fast forward to July/Aug i start feeling a slight pressure on left side which i actually felt was stomach as during sep/oct i had bad stomach so finally saw the GP last week. He did a stool test and a ca125....and now im being sent to the hospital under the 2 week pathway 😭 and my anxiety is through the roof. I keep thinking surely it has to be the cyst....it cant be cancer because it would have been picked up in that march scan? Help!