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

  • I just want to give you the most major hug. It sounds really traumatic even just getting the stage you're at let alone an 8 hour surgery. I hope there are cancellations and you get in quicker.

  • Also sending hugs, what a rough ride you are having of it. I actually am struggling to believe you need to wait into July with it ruptured and leaking. Is that making you feel unwell? How are you keeping yourself busy? You are such a trooper and seem so positive against it all. I really hope it’s not long now and they are giving you worst case scenarios. I think surgeons tend to err on the side of caution and not sugar coat anything so you go into surgery with all of the info. Also fingers crossed not for the stoma but even if it does happen - it might not be forever, surgeons are amazing at reversal etc. sending hugs and healing thoughts. You are amazing x 

  • How are you getting on with your eating? And your partner? Hope things are ok x 

  • Any word on your surgery or any update? That’s a month since my pre op. I’ve been put on iron since it’s low. No word on surgery yet though. I have a holiday booked in 3 weeks though so hoping it doesn’t get offered soon!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

Reply
  • 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

Children
  • 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 god don’t say that… after my sisters 3 month delay it’s been my worst nitemare! And dr says he will take a pic … bet that’s one u don’t wish to see x

  • Pre op today! How did you get on? 
    I got my operation date today, it’s July 9th. Just trying to figure that all out being summer holidays and having a 10 year old. 
    thankfully we go on holiday 21st June so I will still get to go! 

  • Hey, that's brilliant news! Everything was fine and I've been declared fit for surgery. She told me it will probably be within the next couple of months hopefully, so fingers crossed. I think recovery time for laparoscopy is fairly short, so maybe 7 to 14 days of taking it easy, but in the meantime staying mobile. Can't wait to get it all out the way and think about something else for a change! X

  • Oh that’s brilliant news. What a stressful time it’s been. Can’t believe it won’t be long until a year has passed since we started with all this!x 

  • Dear lovely members, I wanted to thank you all for sharing your stories, you are all truly inspirational.  You are helping me so much through my own journey. It's almost 2 years since I had surgery for breast cancer, I'm 53 and I've been told I've gone through the menopause. I haven't had a period for 18 months but three weeks ago I  started with bleeding.  I was referred to the consultant and I've been told I have got a large growth on my ovary. Such a shock,  I've got my MRI on Thursday, how long has it taken in general for results to come back from MRII? I am staying positive and always manage to make it through in the daytime but nights are shocking, wake up and mind is going at 100 miles an hour. Sorry for any typos not wearing my glasses xx

  • Hi kitty,

    sorry to read you are in this horrible waiting limbo. I had an MRI unrelated in October and they called me approx a month later to say a mass was there. I then waited for an MRI with contrast which I got on Xmas eve. I had results about 3 weeks later. Unsure if there was a delay because of festivities or quicker as not so many routine appointments over the festive time. It felt like forever, I know that feeling you are having an sympathise. 
    are you having any bloods taken to check your ca125 levels? I think that can sometimes (not always) help the gynaecologist build a bigger picture. 
    good luck, fingers crossed you join us who are lucky enough to just have a horrible cyst. 
    mine is due out in 3 weeks.x 

  • Hi Kitty14, Sorry you're going through the horrible unknown stage. I had my MRI on 23rd December and I got my results on 9th January. It felt like the longest wait ever, and maybe it would have been quicker if it hadn't been Christmas, but who knows? Hope you don't have to wait too long. X

  • Hi Cloudy, 

    I wish you all the very best with your surgery and a steady recovery.

    Thanks for sharing the information on how long your scans took. The waiting is do hard but I know from my breast cancer diagnosis everything started to happen so quickly it didn't give my brain enough time to process everything I was being told. I'm hoping it's a horrible cyst to. Blood results were normal so that is a positive. 

    Thanks again for your support xx

  • Thank you for sharing Jembers, I've never been so attached to my phone, I'm terrible for putting things down and forgetting where I have put them. I've been walking around with a little across the body bag, I must look very strange. X