Elevated CA125

[Weddingspeakup10]

My CA125 blood test result has come back elevated ( reading is 38). I'm waiting for a pelvic scan, but I feel suicidal, I can't eat, sleep or stop worrying about Ovarian Cancer which is what the scan pelvic scan will check for. Should I cancel the scan? I just can't cope anymore. I have young children. I have just turned 40.

The normal range is up to 35. I’ve had readings in the 50s and have been scanned and nothing untoward has been found. Subsequent tests have been lower.
I know it’s easier said than done, but please stop worrying. You’re only just outside the limit. The pelvic scan will check for any abnormalities and various measurements will be taken.
CA125 levels can fluctuate due to various factors including menstrual cycle, pregnancy, recent pelvic surgery, endometriosis, uterine fibroids, and even stress, meaning a slightly elevated level may not necessarily indicate cancer and should be interpreted in context with other symptoms. Do you have any other symptoms at all?

Hi OP,

Of course you are worried but there are other reasons for this to be elevated- endometriosis, pelvic inflammatory disease and even periods can cause this. And your level is only just above the normal range.

And definitely don’t cancel the scan because it will help to find out what, if anything, is going on.

Forgot to say - do not cancel the scan!

My periods are fine and regular but I have bloating, that's why I went to the doctors who requested the blood test.

I'm so scared. I'm terrified to find out I'm dying, can't stop crying thinking I won't see my children grow up. I'm shaking thinking of taking the scan.

@Weddingspeakup10
The good thing is you've had the test. Worry is no good unless you actively help yourself throw yourself into testing. Try not to worry it's unlikely to be that and reading the comments will definitely help put your mind at rest. Hopefully the drs will get back to you on what/if they need to do anything else

I think it's very marginally elevated, you now need to trust the process and go for the ultrasound. The combined readings of the scan and the blood test are well trusted ways of showing if there is something to worry over or not

Hi OP. Just for a bit of perspective; when my mum had ovarian cancer her CA125 was 2,000. Please try not to worry x

Likewise when my mum had it hers was something between 500-1000.

Thank you for your replies.

I'm so scared of the scan, I keep thinking should I go. I'm not sure I can live with a cancer diagnosis, I can't eat, sleep or focus on anything at the moment, I am absolutely terrified.

But surely you can’t live with this worry. As others have said levels are much more elevated when anything untoward is a possibility. You must go.

Hi OP, I'm sorry you are so worried and I do understand BUT, as others have said, it's only just outside the normal range and there are loads of non sinister explanations. Definitely don't cancel the scan!!! It'll more than likely reassure you and if does happen that there's something there then you want it treated not ignore it while it gets worse. Definitely go and hopefully all will be fine. Big hugs though, anything like this is a worry when you have small children .

I have to go on my own because my husband will have our children. I'm terrified. If its cancer I'll be dying. I just feel like ending it all. I just cry and cry and I'm so scared. I feel like I can't focus on anything. There is just this sad presence and I can't escape it. It's like a nightmare which I can't wake from x

I know it’s hard but you need to try and not be catastrophic about this. As others have said it is only just outside the range. My went from 8 to 36 after pelvic pain but ovarian cancer was quickly ruled out and I have endometriosis which has been diagnosed instead. 38 is not high. People with ovarian cancer have scores in the hundreds and thousands. It is a scary time but keep faith that you’ll get an answer and that your levels are low.

This is only slightly raised. I saw a specialist after a pelvic ultrasound found a cyst on my ovary and my CA125 was 78.

My specialist told me he wasn't concerned and the CA125 results can vary depending on where you are in your cycle. Endometriosis can also cause the blood test result to be high.

I had to repeat the test after a couple of weeks and I never found out the result, but was told it was high again.

I ended up having the cyst and ovary removed but the high CA125 result was propably due to either the cyst or some pelvic adhesions which were found during the op.

The consultant told me the CA125 can often cause patients alot of unnecessary worry.

You need to get your head down, live in the moment, stop anticipating things that haven't happened, and get this done. You are stronger than you know and you can do this.

I keep trying to think of other things and it is always there. I feel so low. I'm really scared

Even in the event that it does turn out to be cancer the chances are that you wont be dying.

There are many more treatments being developed for all sorts of cancer all the time and many are curable and without after effects if they are caught early.

Which is why it is important that you go for that scan.

I know that the thought of what it might be is scary, but these days cancer is NOT a death sentence, and to suggest that it is is frustrating and upsetting to those like myself who have had it and are on the road to recovery from it.

I am really sorry, I don't mean to offend anyone. I'm just in such a very dark place right now. I'm terrified of losing my children

I wonder if you need to discuss these feelings with your Gp? It's totally normal to feel scared and worried about cancer tests but you seem to be spiralling. If you agree, they might be able to give you something to calm you down whilst you await the tests.

Plus it will be very upsetting for your children to see you like this.

I'll call them tomorrow, I haven't slept for ages or eaten. I just don't know what to do. I feel I can't cope. The news my blood tests were high has completely floored me. I feel like if I cancelled the scan I could run away from it as I wouldn't know where as if I find out, I just couldn't cope

Your CA125 is only very slightly out of normal range, I really wouldn't have this level of worry and anxiety. Of course it's nerve wracking but you need to get a handle on it. My levels was in the hundreds, 700s with infection.

There's no point in cancelling, it will make things worse for you mentally. Better to try to get it over and done with as quickly as possible so you know the outcome (which is likely to be negative). Your Gp can prescribe a beta blocker which will deal with the physical panic feelings and maybe something like diazepam to help you relax and sleep.

I'll contact them tomorrow, I'm just out walking, can't sleep at all. My mind is spinning, I feel dizzy. My littlest child is only 2, I look at him and feel sick with fear

I know it is very scary, I've been there myself (twice!) but please don't assume the worst. As others have pointed out, your levels are only just elevated above normal and there are loads of possible explanations other than cancer. Just please get than scan to find out for sure.

And as I was trying to get across in my previous post (perhaps not worded as well as I could) even if it did turn out to be cancer you are likely to get through it. Many cancers are so treatable now and you can come out the other side as fit and well as you went into it.

As others have said, perhaps speak to your GP about getting something to help calm your nerves and help you sleep while waiting for the scan and results. Your children seeing you in this state won't be helping either them or you.