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

  • 6 rounds then onto a maintenance drug, not sure which yet x

  • We went to see a Professor privately just after Joanne’s op and she was adamant that she should be on Avastin, she was doing weekly chemo and Avastin every 3 weeks, when her oncologist changed he took her off it and I do wonder if that was the reason it got worse so fast… stay on the Avastin xx

  • Oh lovely! I love Portugal. I am just back from Alicante last night. I had not seen my friend that lives there for 18 months as had put off travelling when they found the mass, so I feel like I’ve done something really nice. 
    how did your chemo go today?x

  • Still here! Was an 8am start and I'm midway through taxel with carboplatin to go. Looooong *** day but glad I've not had any allergic reactions so far.

    Ah being in the sun is so healing isn't it! Hope you had a great time x

  • Goodness me that is a long day! How much longer to go? I don’t know why I thought it was like an hour and done! X

  • Ha everyone else seemed to be in and about but I'm an 8am til 4pm at least girly! X

  • Mine was supposed to be a 30 min carbo only but ended up 4 hrs x

  • Hello! Have you had histology results yet?x 

  • Hey, long time no hear!  I hope everyone is doing well. I know that some of the people who have contributed to this thread have been diagnosed with cancer, and I have found their positivity and strength truly amazing! This is what this forum is all about. We're all looking for comfort and people to tell us we'll be ok, but I think we also need a dose of reality and to hear the other stories too, because often they demonstrate that there is light at the end of the tunnel. This Friday, it will be 4 and a half months since I had my surgery, and still no histology results! I've been waiting for an update via the MyChart app, but it just keeps saying "nothing new to show". I decided to take another look at my NHS app. It's got my ovarian cystectomy and bilateral salpingo-oophorectomy listed in my health conditions, and I noticed the following:- Status: Past and Ended: 18th October 2025. According to Google, this means that "the medical issue has been resolved, is no longer an active problem, or a treatment period has concluded". Hopefully, this means I can put this chapter behind me. I will seek confirmation from my GP, but fingers crossed, that's me done!

Reply
  • Hey, long time no hear!  I hope everyone is doing well. I know that some of the people who have contributed to this thread have been diagnosed with cancer, and I have found their positivity and strength truly amazing! This is what this forum is all about. We're all looking for comfort and people to tell us we'll be ok, but I think we also need a dose of reality and to hear the other stories too, because often they demonstrate that there is light at the end of the tunnel. This Friday, it will be 4 and a half months since I had my surgery, and still no histology results! I've been waiting for an update via the MyChart app, but it just keeps saying "nothing new to show". I decided to take another look at my NHS app. It's got my ovarian cystectomy and bilateral salpingo-oophorectomy listed in my health conditions, and I noticed the following:- Status: Past and Ended: 18th October 2025. According to Google, this means that "the medical issue has been resolved, is no longer an active problem, or a treatment period has concluded". Hopefully, this means I can put this chapter behind me. I will seek confirmation from my GP, but fingers crossed, that's me done!

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  • I'd interpret that this way too. I'm glad. Hope the GP confirms. It's way too long to wait for confirmation.

    Hope everyone is doing okay. I'll be back to check on everyone's posts at the weekend and catch up. Big hugs to all.

  • I would take that as you have my says significant and active. I am so pleased for you and like you have so wonderfully put this chat has been a godsend for us all it has certainly helped end and been my comfort since June. You started this thread 11 months ago thanks you Jembers. Hope everyone else is doing okay recovery and treatment wise. Love to all 

  • Hello everyone! This chat is brilliant and I'm sure it gives a lot of reassurance to others going through it.

    It's maddening that you're waiting so long for the pathology results though! You'd think they'd just ping those across to you if you're benign.

    I've had one cycle of chemo and due my next in a week's time. Annoyingly my white blood count is very very low so I've had to be admitted whilst they boost it otherwise I could become very unwell. I feel totally fine and only called them as I had a tiny sore throat but they got me in and on IV antibiotics within 20 mins!

    Xx

  • totally agree with your comment about everyone’s story. People are amazing and the comfort I’ve had from “strangers” has just been the best support I ever could have wished for. 
    That’s me 4.5 months post op too. I have never received histology results either. However I was at the GP yesterday as I’m having a bit of break through bleeding, she reminded me that 4 months post op I am likely still healing internally however she is going to check with the surgeon for a surgery report as neither of us really knew what to expect. I get some short brief stabbing pains where she reconstructed my ovary too, so I’d just like to check what’s expected and normal. Otherwise I’m all fine, it’s not affecting my day to day life. While I was there she logged into the hospital system and read out my histology which was sitting there. It was a mature teratoma, all benign and nothing of concern. So I am very very happy. 13 months from finding the mass to getting the all clear. What a journey it’s been. Thank you so much ladies, you have all been some support. I’ll stick around, I like to check in on you all too x 

  • Just seen you have been admitted. Are you still in hospital? I’m so glad your care has been superb. Fingers crossed your white bloods are up again very soon and you can get out before your next chemo x 

  • I'm hopefully being released today! My white blood count is back to normal so the injections worked well. I'll have them included in my next round of chemo so I can avoid a repeat!

    Looking forward to a night in my own bed x

  • Ah, those symptoms are similar to mine after my op. I was terrified for a couple of years they'd got it wrong.

    My gynae oncologist had me back to tell me the news when I was clear because she said she loved getting to. There must be a real burden on the system if it's taking so long to simply deliver good news.

  • Oh, I so hope you get home well tonight! Hospital is a necessary evil at times but so much better to have our creature comforts x

  • Thank you Lyns, that’s actually so helpful to hear because when I have googled I don’t seem to find much about pains after a couple of weeks.
    I am very grateful my GP could login somehow to the hospital and see it, as I have been worrying with the symptoms after. she said I should expect a letter in a month or so, so I guess it does show you how slow the admin side of things are. I did think that it was hopefully benign as it was taking so slow but nice to have it confirmed. 
    the poor nhs is on its knees, I’m so pleased when I read people are still getting great care. 

  • Oh good, so glad you are back to normal. Enjoy a good sleep tonight back home x