Blood Tests

[karena90]

Hello,

I was just wondering, when people have had the CA125 test, have they had a number of other blood tests along side it? I’ve been sent for CA125, CEA, AFP, LDH and HCG.

I had an ultrasound three weeks ago which showed a large cyst and bigger endometriomas than my previous scan last summer, so I assume it’s to do with that. However, I’ve just noticed that most people refer to just having had the CA125 test but not alongside other tests. Anyone else been in this position, and what happened next? The letter that requested the bloods stated they’d arrange a face to face with my gynae after the blood tests to ‘discuss my options’.

The ultrasound was actually to discharge me (which I was happy with; I don’t get much pain so I’d declined surgery and was happy to leave it for now) but this has now thrown me.

Thank you 🙂

[Jade2006]

hi Karen

Sorry you are going through this

My personal view is not to decline surgery as you will need it as some point and you definitely don’t want emergency surgery.

It’s good that they are checking and doing other bloods , you can always ask them why though .

I have lost a ovary due to a large cyst so delays are not good , plus the pain with will come eventually and it’s really not nice.

How big is the cyst ?Xx

[karena90 in reply to Jade2006]

Hi Jade, thanks for replying. We don’t have an endo specialist here which was part of my wanting to avoid it for now as I don’t want to risk surgery that then messes it up more. I also guess I feel guilty that others are in so much pain and I’m not, so I feel like I’d be taking away someone’s opportunity for an op! I’ve luckily already had my daughter and only want one so I’m not concerned from a fertility POV.

The cyst is currently 7cm, though from the letter it’s unclear if it’s an endometrioma too (I also have some endometrioma which a few cm on each ovary) or a regular cyst. I’m planning to call today to try and get some more info though I’m not holding my breath 😬

Sorry you lost an ovary, that sounds really horrid 😞 are you doing any better now?

[Jade2006 in reply to karena90]

Can you get a referral to a endo specialist or travel to see one privately also could do with a mri done by a specialist.

My endo also spread to my bowel only shown through a mri with a specialist, I had to have a bowel resection too so if I didn’t have it done gosh knows what would of happened.

That’s good your not concerned from a fertility point of view.

Yeah I wasn’t happy to loose ovary but had no choice I was only 36 and got feel like that comes with health problems in it’s self .

I had my last surgery in July , no I’m not better as endo doesn’t just go easy , I also have adenymoisis so not sure which causes the pain more I suspect it’s not the endo .

They have just done what they could for now and I guess more surgery’s in the future but who knows .

I hope you get some answers and good advice , but that cyst won’t go away and the bigger it’s gets the more risk , it might start leaking out too which I think had me thibi the was dying .

Hope this post doesn’t scare you that’s defo not my intention and I know my case will not be the same as yours but I just wanted to give you my advice and experience to help xx

[karena90 in reply to Jade2006]

No that’s really helpful, it is a little scary but then everything I’ve found to do with endo has been so no change there! It’s helpful to know what others have been through. You’re right though, ignoring it probably wasn’t the best course of action, I guess the gynae were happy to leave it as it meant I wasn’t another person to add to their waiting list but maybe they’re regretting that now 😅 there is an endo centre fairly nearby so I’ll look into that as I’d feel safer going to someone who knows exactly what they’re doing.

Thank you for sharing your experiences 🙂

[Jade2006 in reply to karena90]

I only want to help other people and I know my case is more extreme the others .

I wish you all the luck and your health is very important so look after yourself xx

[Barleyboo123 in reply to karena90]

hi , I had multiple blood tests also as a polyp was discovered and it was cancer.

[Amy2106]

Hey,

I had my CA125, AFP, HCG, CEA all done. My CA125 was raised but the rest were normal. I had 2 large cysts and diagnosed with stage 4 endo following my surgery. My consultant advised me he didn’t feel I needed to have the bloods done but he’d get in trouble if he didn’t do them.

I had surgery in June which wasn’t as straight forward due to the size of the cysts and one reptured previously. This has now affected my fertility and I will likely need more surgery.

Happy to answer any other questions if you have any! Thanks

[karena90 in reply to Amy2106]

This is so reassuring, thank you! Reassuring from the point of view that they might not be requesting them as they suspect anything sinister. Did it take long for you to get the results back?

I’m really sorry it’s affected your fertility and you might need more operations, what a horrible situation it be in 😞

[Amy2106]

I never actually discussed the results with my consultant as I was put on the waiting list for surgery. But I called my GP and he told me but they were back within a week or less. My CA125 was 69 which is slightly elevated but was told not to be alarmed unless it was in the thousands as the cysts normally cause some elevation. So I wouldn’t be too alarmed if they are slightly high!

[karena90 in reply to Amy2106]

Thank you, hopefully I shouldn’t have to wait too long. I’m almost expecting it to come back high given I’ve read endometriomas and cysts can raise it so at least I shouldn’t get a shock. Really appreciate the advice 🙂

[Amy2106 in reply to karena90]

No worries hope it all goes ok for you!