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

  • That's great that you'll hopefully be able to discuss something with your GP tomorrow. I'm sorry you've got other things going on at the same time and I can easily imagine that your mind will play tricks on you and lead you to think it's all connected. Most likely it's not! I'm also in this hideous no man's land where I'm sick of waiting but also terrified of finding out, just in case it's bad news. I have to keep reminding myself that all I can do is let them do their job and whatever it is will get sorted out. Easier said than done! I'll speak to you very soon. Take care X

  • I just wanted to update and let you know that I have no news. My letter had not made it to my GP nor myself since the gynaecology secretary called me yesterday. Still in limbo! X 

  • Hi cloudy, sorry to hear you're still in limbo. I suddenly received an update today at about 5pm this afternoon while I was out with my family. It seems that my cyst is a dermoid with nothing much of concern on MRI findings, but will require surgery which I already knew would be the case. It does have some atypical features, but I have been stepped down from the cancer pathway and I'm now waiting for further appointments to discuss treatment.

  • Aw that is the absolute best news! I am so happy for you. No concern. How are you feeling? Being stepped down must be such a relief. Your family must be so relieved too. Whisk surgery isn’t ideal, it’s actually so nice to know it’s nothing sinister. 

  • Thanks so much. I am feeling much calmer now, but don't think I'll truly relax until it's out and they've had a look at it. However, reading that I have been stepped down from the cancer pathway was a massive relief and a good sign that they are pretty confident that what they're dealing with is benign. I'm hoping that it will just be surgery to remove the ovaries and not a full blown hysterectomy, but obviously that will be explained at my clinic appointment. Just wondering now how long everything will take to get done. I'm sure you'll get your results very soon and find yourself in a very similar situation to me. The fact that they've told you they suspect a dermoid cyst would suggest it probably is and the further tests are just to break it all down and get the clearest picture of it that they can possibly can before removing it. Keep me posted. X

  • Hi there, just wanted to let you know that my MRI results confirmed a dermoid cyst with no particularly concerning features, but will need to be removed. Apparently it does have "significant restricted diffusion" which I've read is a feature sometimes associated with possible malignancy, but is also a finding in dermoid and other ovarian cysts. Most reassuringly, I have been stepped down from the cancer pathway, so fingers crossed everything will be fine. Thank you so much for the time you have taken since I first posted on here to share your own experience, knowledge and advice. When I was having massive panics, it genuinely helped me keep things in perspective and reminded me not to always assume the worst case scenario. X

  • I'm so glad they think it's not cancer and that it helped to read my experience. I remember being consumed by thoughts of the worst. The emotional turmoil was definitely worse than the operation. I still had my doubts after even the biopsy largely because so many in my family had recently had cancer its presence weighed heavily on my mind. Keep us posted with how the operation goes. Wishing you the best of health x

  • Hey cloudy, just wondering how you're getting on and if you're any further forward? I know you were told that a letter had been sent out, and you've understandably been desperate for news. Having had some of the weight lifted from my shoulders, I appreciate how frustrating it must have been that your results had still not arrived, and I've been thinking about it ever since. I've no idea when I'll get my next appointment through, let alone how long it will take to get the actual surgery. It sound a bit crazy, but I keep a copy of the letter with me so that when I have a nervous wobble, I can read it again for some reassurance. I'm still aware that they will need to biopsy the cyst once it's out to be certain there's nothing iffy inside it, but reading that I have been stepped down from the cancer pathway keeps me feeling more positive. X

  • Hello! Oh having the letter available makes total sense to me. I think we will have these wobbles from time to time. I still have not had my letter through. I can’t believe I still don’t have it. I have a GP app tomorrow and I am hoping she has a copy to give me. 
    I called the gynae secretary today and I did however get some good news! She said I had been stepped down to a “routine non urgent” pathway, I asked lots of questions but all she could say it’s likely benign and they are not concerned…I am so happy but I still Don’t know what it is now. I’ll keep in touch if I get answers tomorrow. Heard all good news, but I want it on paper and to know what happens next! 
    did you get a measurement of your dermoid? Does your letter just say you will get an appointment in due course? The routine pathway I was told 18 months on a previous call. I cannot imagine! 
    j am overjoyed that it looks benign for both of us :) x 

  • I'm really glad for both of you. That's great news  

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