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

  • Yeah so I had a huge amount of inflammation where the nodular cyst couldn't break out of all the adhesions I have in my pelvis from 2013 surgery. It's a mess in there apparently. They had 3 Professors check it as they were so surprised but it always came back clear!

  • So the PET scan showed partial uptake at the time, and they have said that was due to the inflammation. Even bleeding cysts can glow on a PET scan so you can get false positives.

  • You can't get better than 3 Professors checking for you , they will understand much more than we ever will and its amazing they've given you the all clear ,and also that they will be checking for any signs of anything wrong ,Its so good to hear a good outcome story .

  • That's interesting. My partner has stage 4 cancer and gets regular PET scans. I didn't know you could get false positives.

    Sorry you've had the adhesions and the cyst. Just glad it's come back negative through multiple observations.

  • That’s such great news that it’s nothing sinister, you must feel a new lease of life after being told to expect cancer news. How’s your recovery been with the attempted laparoscopy and the open surgery? Hope you are well on the mend. Sounds like you have had great care and lots of people checking x 

  • Thank you! Yeah it's such a relief I feel very lucky. Was fully expecting to spend the next few months in radiotherapy/chemo.

    I kept asking them "are you SURE" haha

    Recovery is going ok. It's a big 8-10 inch vertical cut so once I had the staples out I could move and sleep a bit better. Some areas of it have gone a bit funky so I've had to have antibiotic cream and the scar still looks very angry but some bits are really well healed now.

    It took me 2 weeks to be able to properly look at it as I felt like a giant Christmas ham stapled together! But it's improved so so much in just 3 weeks I'm pleased.

    I've been getting out for short flat walks and even managed a glass of fizz with my feet up yesterday after the good results!

    Compared to the radical hysterectomy I had in 2013 this has been easier even though I had the failed laproscopy only a month before x

  • Oh and recovery from the laproscopy was so easy! We got a puppy at the same time and other than fatigue I was able to manage looking after him just fine. After the first week I was taking him for walks etc. i

  • Absolutely delighted to hear things have gone well. After your previous experience and recent uncertainty, you must feel over the moon! I'm still waiting to find out what the plan is for my large dermoid cyst. I'm assuming that because I'm postmenopausal, they'll remove the cyst and both the ovaries. Hopefully they'll do that via keyhole surgery, and if so, I really hope my recovery is as easy as yours was. X

  • Laughing so much at your Xmas ham comment, there’s not much that makes us laugh on these posts so thank you. 
    So glad for you getting to enjoy that glass of fizz!x 

  • Have you any update yet on an appointment for a chat with the gynae? Mine is Monday. Really hoping they give me a date at that appointment x 

Reply Children
  • Hi Cloudy, I've heard nothing! I check my emails and go on MyMFT every day, but it's all very quiet at the moment. I think when we get into next week, I might give them a call to see if they can give me an update. X

  • Good morning. I had my appointment today, I’m not going to lie it seemed pretty pointless for the 1.5 hour travel, but none the less was nice to see the surgeon who will be doing it. I was in for approx 20 mins, I had already had most of the information from dr google so didn’t have many questions. She is going to try and save my ovary but knows im fine if she takes it anyway, if she can just leave me one! The waiting list for my surgery is another 9-12 months, I will get a pre op appointment approx 1-2 months before. She said she will put me down if any cancellations come up but that my surgery was absolutely not an urgent case, lots of women choose to watch and wait when it’s 5-10cm, however I just said I want to just get it out and close this chapter so she’s put me down for ready to go. She was very reassuring and told me to live my life and stop waiting and worrying. So I’m going to book a holiday! 
    when I was in the waiting room with maybe 15-20 other women there were a couple who were crying a lot and it gave me a massive kick up the backside that lots of people are getting bad news and how lucky I am, so as much as I can’t wait to get this dermoid out - I feel like I have a new lease of life after today too. 
    have you had any update? Hope you are ok x 

  • Hi there. So glad you've been seen, but wow...9-12 months!!! I had no idea it could be such a long wait. I've heard nothing so far, and based on what you've just told me, I'm not sure there's much point in ringing them about it. I really hope when I do speak to the surgeon, they are as reassuring towards me as they have been with you.  Keep me posted and happy holiday hunting! X

  • Thank you will do. Keep me posted too when you do hear something! X