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Raised CA125 and cyst, scared

(8 Posts)
Satsunday Wed 26-Jun-19 13:56:52

I found out that I have a complex cyst of 5cm that needs investigating urgently. The consultant said he didn't think I have cancer but we need to make sure (I don't have any symptoms, it was just found by chance). I am waiting for an MRI scan to characterise the cyst. In the meantime I got my CA125 result and it is raised at 47. I'm absolutely terrified. I have really awful health anxiety anyway and I'm just not coping well at all. I had the blood test done at the end of my period but I wasnt sure if by then it would affect the result. The consultant thinks the cyst is likely to be an endometrioma or hemorraghic cyst but he hasn't had the blood test result then.

I have googled alot but I guess I would appreciate any words that might help me to not think the worst. Any positive stories. I am so unhappy and very scared.

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rosie39forever Wed 26-Jun-19 15:05:56

Please don't work yourself up over a CA125 of 47, that's only slightly raised, it is not an indicator of cancer it's an indication of inflammation which would come from a cyst, fibroids, having a period or infection. CA125 is not a reliable diagnostic tool and is usually used as a monitoring tool for the effectiveness of cancer treatment. Some women (me) have a naturally raised baseline of CA125 so please don't worry. The consultant will have seen thousands of cysts and will know a cancerous one when he sees it so if he says no cancer then it's more than likely benign. Try and take some comfort in the fact that it's been discovered and is being dealt with.
I have fibroids and cysts and most definitely don't have cancer, my CA125 hovers around 50.

Try not to worry.

alphabill Wed 26-Jun-19 15:27:34

I have worried myself silly in the past with similar such issues. I have had a 'chocolate cyst' caused by endometriosis and also had simple cysts. I have fibroids and endometriosis and a slightly raised CA125 of 48. This is my normal. It is only slightly elevated and a very unreliable indicator of cancer. Saying this from someone who is a terrible worrier please try not to worry. It is being dealt with and more than likely will be benign. The consultant is used to seeing cysts all the time so take comfort from their words. Good luck.

Satsunday Wed 26-Jun-19 15:28:39

Thanks so much for your reply, I really appreciate it

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Satsunday Wed 26-Jun-19 15:30:33

Just saw your reply too alpha. Thank you, that also makes me feel better. I find it so hard not to 'what if'.

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NameChange92 Wed 26-Jun-19 15:47:36

My CA125 was around 100 when I was tested last year, my GP went from telling me the pain I had been experiencing was muscular and i’d pulled something to looking rather freaked out (which I quite enjoyed tbh since she’d been so dismissive and patronising initially - and because I knew the chances were it was still not cancer). I was at the end of my period too, and it turns out I have an endometrioma and the gynaecologist told me that’s a completely normal value for that situation. So 47 really isn’t that high at all, so try not to worry.

Satsunday Wed 26-Jun-19 16:02:40

Thank you so much. I am clinging on to all these kind answers and it is helping! The consultant said likely an endometrioma so I guess it would make sense (he didn't see the actual pictures but went by the detail in the ultrasound report. The sonographer had said maybe an endometrioma at the time too but it wasn't in her report so I guess that's good that two separate views have been the same). I have no obvious pain from it though. It wasn't clear so I need the mri to help characterise it (which I will freak out about but will have to just get on with it).

I hate the whole fast track thing as it gets me so anxious (had another one for a colonoscopy only a few weeks ago which turned out to be nothing thankfully but back into having horrible anxiety and thoughts again now).

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Satsunday Wed 26-Jun-19 16:05:47

Ps my GP was also very dismissive at first. The first ultrasound said two small cysts and one had bled into itself. GP sounded irritated - said everyone gets them and I don't need to go back for a scan but it's up to me. I'm glad I did as it turned out to be this one bigger cyst (although equally I would like to be in blissful ignorance!). I've swapped GP now.

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