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.

My CA125 was 200 due to endometriosis .
It is a very unreliable test pre menopause.

Thank you, I still haven't slept ir eaten. I've lost weight though sonthats good! I keep thinking what my body is doing. I never stop thinking about the scan, terrified they are going to say they can see something. It was on 38 my CA125 and my doctor said sorry for giving you the bad news x

I don't know about the person you will see, but I think it's unusual for the scanner to give you any feedback at all, unless they are a specialist doctor.

I know how anxious tests can make people. I have always had that tendency myself. I had the same scan for bloating and indigestion. There was nothing wrong. There are a lot of causes for that. Tests just outside the range may also be nothing. Have the scan and hopefully it will reassure you, which is most likely.

Please try and eat and sleep - have you asked the GP for something to help with your anxiety as people suggested ?

Do you have a date for the scan yet ?
As the PP says, don't expect the person actually doing the scan to necessarily be able to give you much information at the time. Sometimes with these various scans you have a person who is expert in actually carrying them out but they need to send the results / photos whatever to a consultant to get an opinion before they'll contact you.

It's Monday, my GP isn't too helpful. Just keeps saying sorry I was the one to tell you the bad news, it wraps around and around my head x

Your Gp was wrong to say that to you. Your numbers aren't even that high. The bloating does need investigating though.

The person scanning you, will send your images to the medic who requested them. You are unlikely to know any thing there and then.

Good luck for Monday.
Try and rest/ eat something nutritious, to maintain energy levels x

What on earth did the GP say THAT for?! He doesn’t know anything until the results of the scan! Jeez these general practitioners are getting worse and worse and sometimes it’s even the receptionists who’ll try to diagnose you! All wrong. Go for your scan OP. It’ll be fine. If you’re having trouble eating try to have at least a banana and some milk xx

I had ovarian cancer in my late 20s and my CA125 was 8. It's not a very reliable test, a number of other things can elevate your levels (and cause the bloating you're experiencing). The waiting to find out is the worst thing, but hang in there.

That's a bizarre thing for a GP to say! Was it actually a doctor?
I have a history of breast cancer which can be linked to ovarian cancer and even the gynaecologist was very blase about my CA125 being 61.

It's highly unlikely you will get any answers on Monday. The scanner is usually a sonographer not a doctor, occasionally it's a doctor.
If there is anything sinister they will let you know quite quickly though so no news is always good.

You must get yourself together though. I do understand that this part is very hard but not eating or sleeping is going to make you ill.

I'm really trying to get through, I just don't feel anything but depressed now. Its like the joy as been sycjed out of everything. If a mark of 8 can be cancer, I'm on 38. I'm so scared. The waiting is horrid, but the thought of a diagnosis is worse. Can't belive I went to the doctors. I think the scan is being done by a radiologist x

Hi.

My mum had ovarian cancer.
Her ca125 was in the 100s.
Her bloating didn't come and go it was persistent, and she looked 9 months pregnant. She also had alot of other symptoms.
One thing her oncologist said was ca125 is not a reliable test. In some patients with cancer it is not elevated and in some without cancer it is elevated.

Hope the scan goes well OP.

Please do seek help for your anxiety but you absolutely must go. Chances are it will be nothing. If it is, then maybe this test will have got you diagnosed lots earlier and saved your life.

You say you aren't sure you can live with a cancer diagnosis, but can you look your kids or husband in the eye and tell them you didn't fight every step of the way for them if you don't go? Do it for them. Do it to give yourself the chance to see them grow up should they unfortunately find something.

Knowledge is power. Please find the strength to pursue your health. How would you feel if it was one of your kids thinking of not having the test? Or your husband?

My bloating does come and go, I just don't know if i should find out. I'd rather be happy and not think about this. I'm trapped now. I've been sick daily ever since finding out about the blood test

You need to remember, that even^ if it is^ cancer ( and it probably won't be) then it will more than likely be treatable. I know it's scary and terrifying, but many people have to go through the tests and the wait and yes, it's torturous, I agree. But you need to tell yourself that you are one step closer to knowing what is causing the bloating.

Xx

This exactly OP and so well put.

I'm scared it's spread and won't be treatable. I feel different know x

Hello there, I understand that this is difficult, but you need to breathe.

CA125 is an inflammation marker. Yes it can help indicate that you should have a scan. But that’s all it can do.

If your CA125 is 38 and it was cancer then it would likely be caught very early.

Of course you have to go to the scan. If you don’t go to the scan you won’t know. You have to go. Denial doesn’t treat cancer.

My CA125 was 333 and it wasn’t cancer.

My grandmother died of ovarian cancer and so yes, I was worried initially, but I had lots of scans - vaginal, CT Scan and MRI and it wasn’t. You’ll be on the 2 week pathway. They will look after you. They have done this hundreds of times. You won’t be the first person to cry at their scan.

Turns out my CA125 just sits high… last time I had it tested it was 199, they did more scans. Still not cancer.

I have a fair amount of back pain and bloating too, so that worried me, but it’s the inflammation around that maybe that probably pokes my CA125 a little high.

Your GP just said, sorry to phone with ‘bad news’ as they have to refer you for a scan. They over egged it a bit there.

But you are alive now and acting as if you will be dead tomorrow. You will be fine. Don’t waste the energy on this worrying. Enjoy your children, taste the food, smell the roses. Go to the scan.

You have little children and a husband. You owe it to them and yourself to go for that scan. It could save your life.

When I was your age, I found a lump. It was cancer. I underwent loads of surgery and treatment. My son was 18 months old! If I had ignored my symptoms, I would have been long dead! I'm now going through it all again. My kids are 20 and 17. I look at them and that's all I need to drag myself to chemo next week.

Get some diazepam before Monday, eat little and often and tell yourself that you ARE going for your scan! 🌺🌷🌻

Oh my goodness, you are so strong, sorry your going through this, you sounds amazing. All I have wanted to do is run away, I'm not sure where to. I just want to see my babies grow up x

That makes no sense. You don't know the outcome and you're not happy now are you? Whatever this is, and let's remember it could be anything or nothing, you need to find out else you're stuck in on limbo. Take a step back and work on calming yourself.

No, I'm not strong or brave. I have no choice. Just like you have no choice m, but to go to your scan. Whatever the outcome, there IS a plan to follow x

Don't know if this would help at all but mine was 45 and I have adenomyosis (womb lining growing in muscular wall) apparently. It can also fluctuate during your cycle.

I have ovarian cancer and my ca125 level was 41, but I had a noticeable lump which did not come and go. Mine has been caught early and has not spread. I’ve got young children and I’m determined to live the happiest and healthiest life for them despite this.
Years ago my ca125 was a similar level and I did not have cancer, just endo. So I don’t think it tells you much.
the wait is the hardest time.
the chances are it won’t be cancer. I’ve just been unlucky apparently.

Oh my gosh so sorry to hear this, sending you all all the best xx where was your lump? Hope your OK x

Just to add, that Flutterbees point was that CA125 is an unreliable marker for cancer. A mark of 8 wouldn’t be referred for more tests in your situation with no other symptoms.

I should imagine that Flutterbees had other symptoms that were being investigated and they were testing her blood for other things which is why she knows what her CA125 was.