8cm Complex Ovarian Cyst with CA125 of 51 - Absolutely terrified!!

I posted on here a few days ago after I found out unexpectedly that I had a large complex ovarian cyst. The consultant thinks it could a dermoid cyst but can't determine this for sure and is sending me for an MRI scan. In the meantime, my CA125 has come back raised at 51!!! I'm postmenopausal which just adds even more risk into the mix and I just feel like the odds are stacking up against me. I've had no symptoms and only got checked out because of a tiny amount of postmenopausal bleeding. I'm all over the place.

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  • Hello jembers, I wrote on your first post as I also have an incidental mass very similar. 
    when I had my CA125 test I was told it is very likely for a raised amount even if only a cyst as it can signal other things like pelvic inflammatory. The levels can be in their hundreds just on a period so actually the fact that you went to the docs with some post menopause bleeding might actual explain the higher level.

    when is your MRI? I am also awaiting mine, I had to have further bloods taken on wed and awaiting my MRI now. 2-4 weeks. 
    more waiting…..

    keeping everything crossed for us! 

  • Hi cloudy1986, thanks so much for checking in with me, it means a lot. I've been given an appointment for 23rd December (Merry Christmas!!) I'm clearly on an urgent 2 week wait due to the nature of my cyst, my age and my blood test results. It's very hard not to fear the worst. I'm trying to remind myself that my situation could be completely benign, but due to my terrible habit of googling, I've convinced myself that it's something terrible! I am genuinely sending as many positive thoughts to both of us as I possibly can. X

  • Thanks hun, in myself I don’t feel too bad, I have stronger painkiller but it’s worse at night and the lack of sleep is getting to me so I was disappointed to hear it might be another month! My sister is living with a stoma do not do bothered about that tbh but it’s the get ifs as always x

  • Eating is ok but now have to do a pre op high protein diet and no wine… that’s a killer! X

  • I was hoping to be at a wedding in August and then a holiday soon after but with each week delay it’s looking unlikely… go on holiday if you have the chance but don’t miss a surgery date x

  • Hey, sorry for the late response, I've only just seen this. It all sounds quite overwhelming and it must be incredibly frustrating and quite scary that progress seems to be so slow, especially after everything you've been told. I hope you're holding up ok. I suppose when faced with the honest facts, you just have to get on with it and keep ploughing on. I was all over the place when I was waiting for results. Even though I've been told it's a dermoid cyst and I'm just waiting for routine surgery, I still get scared and ask myself what if. I'm sending positive thoughts and hugs. Take it easy and keep in touch. XX

  • Hi cloudy, I've got my pre-op appointment next Wednesday, but I doubt I'll be getting surgery anytime soon. I got the distinct impression when I was speaking to the consultant that it could be quite a while, as I'm on a routine waiting list. Considering I could have chosen to do nothing at all for the time being, I wouldn't be surprised if it's not until next year! I'll ask next week if they can give me any indication at all, but I'll be surprised if they can! Hope you start feeling better now they've put you on some iron. Take care. X

  • I think that’s the issue, if they could deal with immediately it’s done but the waiting… seems like forever! They still think it could be benign so that’s what I am holding on to! I have a date now.. 25/6 so loads of tests beforehand and meetings with anaesthetists etc….i think all surgery is scary tbh hope yours get shipped out quickly too xx

  • No sleep is the worst. I hope they manage to give you something in the meantime. Any more checks while you are waiting this month or just left in limbo? 

  • Oh that’s great news! A pre op is only valid for 6 months so i guess it means they are hopeful to have you in before then. Although I know someone in our shoes who has had 3 pre ops! Fingers crossed that’s not the case for us. I keep wondering what size it’s going to be when they take it out!x 

  • Oh I just seen your reply that you have a date, less than 3 weeks so I am so glad for you. Just get this chapter dealt with. Sounds like you will be busy prepping so I hope this time passes quickly. Maybe you will get to your wedding after all! X 

  • Had pre op Wednesday, have one on 10/6 with nusrses to explain the operation on one on 24/6 with the anaesthetist… plus anything else they think I need … g

    no alcholol at all ( that’s the only thing helping lol) and a high protein diet for next 3 weeks x

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