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.

  • 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  

  • (I hope it's not 18 months though )

  • That's great news. It sounds as though our results have been very similar. They measured it on the MRI at 7.5 x 4.6 cm which is slightly smaller than it said on the ultrasound. At the bottom of the letter under "Follow-up Plan" it says - You have been stepped down from the cancer pathway. You will have a follow up in the clinic to discuss management. No idea when that will be. 18 months sounds crazy though!! X

  • Hi, I’m sorry it’s taken me so long to get in touch, what a wild ride I’ve been having with this. Have you had any word? Has life gone back to normal yet? 
    I received my letter from gynae last week, it said it’s a fibroid in the pelvic cavity and would be stepped down to a routine appointment. I then had an appointment with my GP which was unrelated and she just so happened to ask when I was due my follow up with gynae, I showed her my letter and said I had asked and it was 18-24 months. 
    she was so shocked and said this is not what was reported at all and my letter was incorrect (cue another panic) and she showed me the result on the radiologist feedback on her screen - it is reported as a dermoid cyst or mature teratoma, it has the size on it 76x82x47mm, it’s plainly states it is benign in character (which is wonderful) but that it will require surgery and removal of my left ovary. 
    she is absolutely horrified I have received the wrong info and has emailed to clarify. I am pretty concerned about what would have happened had she not just asked me in conversation. 
    I’m still in limbo of what now! 
    hope you are ok x 

  • Hi there, so lovely to hear from you. I'm still waiting to see them back at the clinic. As far as I can see, routine surgery waiting times are supposed to be no longer than 18 weeks, but who knows?  I can't believe they messed up your information like that! It's not what you need when you've spent weeks feeling terrified about the situation. Great to hear it appears benign. It's such a relief when you read those words. My report didn't actually use the word benign, it just said there was no concerning postcontrast enhancement and that no overt concerning features have been seen. I feel much less stressed about it now, although I won't completely relax until it's out and it's been biopsied. I think because I've already gone through the menopause, they'll remove both my ovaries and fallopian tubes. That seems to be the usual course of action in post menopausal patients. I just feel a bit in limbo because I've no idea when I'll get my appointment. We were planning on booking a holiday, but have put it on hold until we know what's happening. It will take several weeks to fully recover from the surgery as well. I'll be so glad to put all this behind me. I'm sure you probably feel the same. X

  • I’m so glad for us both that we hopefully don’t have anything sinister to worry about that is of course the main thing. Just surgery to go! Keep me posted when you get any further update, I’ll keep you in the loop when I hear anything further. I feel like I’ve just been on an emotional rollercoaster! I am also in the same boat about a holiday, would love to book but holding off just in case I got a date to go and see them, hopefully that won’t be too long!x 

  • I was thinking about you both at the time you posted today, cloudy. The operation wasn't as bad as I imagined it would be but I had a vertical incision to get my monster 10 cm cyst out. Recovery was faster than I expected too. Hoping yours both go smoothly and you both recover quickly x