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.

You sound like you have very bad health anxiety OP, I hope you're ok. My Mum had this and spent her whole life worrying she was going to get ill, it was very hard as her daughter to witness. I hope you'll be ok. I have the same scan in a couple of weeks but I'm feeling positive and sure that it's nothing.

Mine was 40. It was an ovarian cyst.

I will get help tomorrow. Good luck with scan, how are you keeping positive? I couldn't feel worse, just keep crying constantly 😢

It could be a number of things such as endometriosis or adenomyosis or stress or other things. It won't help to worry although I know it is scary. Please be kind to yourself and don't catastrophise it doesn't help.

What we're your symptoms of the cyst ? Did it take a week for the results, how did you cope?

Just bleeding between periods. I have a coil so periods v light but was getting random spotting.
I'm a bit older though.
I know loads of women who have had slightly higher CA125 and its nothing to worry about. I would really not worry. It was great having the scan and getting an explanation for the raised levels.

This is really common and yours isn't high is only borderline.

Mine was measured at 65 two years ago. Scan showed nothing. The gynaecologist told me that anything abdominal can cause raised CA125 (from UTI to constipation). It's really only a useful tool in women who have had ovarian cancer. The measure is then often in the high 100s and they see it slowly coming down.

I have a history of breast cancer. Two years on mine is still raised and they seem unconcerned.

Maybe go back to the GP for your anxiety?

I cope with these tests and scans by telling myself that not knowing doesn't make something go away. Getting a scan and checking it has luckily always given me the all clear so the relief is great. But if it was bad news I'd rather know sooner rather than later.

I just don't feel it can possibly be anything else because my periods are normal.

No bleeding in between periods or are they particular heavy, just the same as they always have been.

I had a baby 2 years ago, would they not have picked a cyst up at the pregnancy scan.

This is why I'm so scared. I'm terrified it's spread and won't be treatable.

My iron levels were okay ( normal) as I had these done too. Xx

Why did you have the blood test op?

Because I was bloated, I feel bloated quite a lot, sometimes my stomach looks huge, like seriously 8 months pregnant and then other times it's okay until I eat/drink.

I told the doctor the symptoms and she did like a physical examination ( felt my stomach) and then requested the blood tests.

I then had the awful news a few days ago my CA125 was raised to 38. My iron levels were normal though.

Ever since this time I've been in a depressed state of worry 😟 I shouldn't have gone. But I can change that now.

Do you know when the scan is yet

It's Monday. I'm also going to be on my period then. I'm going on my own. I feel I have to go now. My husband says I'd be mad not too, but I can't cope with the bad news

you've just got to do it. So settle that in your mind, take away the choice, grit your teeth, do it.

I will go. I'm so scared. Not slept in ages now. I can't sleep and want to cry when I see my kids. Do you think it will be treatable?

You are catastrophising I'm afraid. Many many people have to live with a cancer diagnosis ( myself included) and I also have children. We have no choice.

You've received good advice from the members here; take that advice on board.

Best of luck 😊

Thank you. I'm so sorry to hear about your cancer diagnosis x

Totally agree.

Diazepam can be effective, in situations like this.

I agree with Pp that you should talk to your Gp about the anxiety. It’s a tough time and you need help to manage the thoughts.
a raised Ca125 does not definitively mean ovarian cancer, and yours is only slightly raised! I had a raised CA125 once and it was because I’d slipped on ice and fractured a rib (didn’t know at the time though!) and apparently even abdominal inflammation can raise the CA125!!

That being said, I did have advanced stage 3c ovarian cancer - when I was pregnant - and was treated with chemo and surgery and my child is turning 13 this month and I’ve been cancer free since treatment ended 11 years ago! So, it can be overcome and my oncologist tells me that there are WAY more advancements in treatments since I went through it.

I do want to gently prepare you for a timing possibility though, as gently as possible - when you have the scan on Monday (and you should have it done), it is unlikely that they will give you an immediate all clear or diagnosis. When I was going through the scans etc, it took a few tests to determine the whether I had cancer, then the staging etc before I got a definitive diagnosis and treatment plan.

however, statistically it’s unlikely you have ovarian cancer at all. Sending hugs.

I think is unlikely you have ovarian cancer. If you do, then it is likely to be treatable yes.

You are young, and this a low level of CA125. IF… and it’s a big IF… this is OC then knowledge is power. The earlier you know the more you can do something about it. It is not a death sentence. In the meantime, please be kind to yourself. Try and calm yourself and think positive outcomes, particularly for your children’s sake.

Thank you for everyone's support xx

You've got this, you're a strong caring mum

Thank you, can I post here for support on Monday? I'm going in at 9am. Does abdominal bloating go when you lie down?

It doesn't matter about the bloating, you're not having the scan to have any bloating measured, they are going to use the ultrasound to look at your pelvic organs (uterus, ovaries, and they'll see your bladder) and check they look ok.