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.

Parents
  • 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

  • Ha I know! Yes maybe they don’t do anything but consultant thought I should take what they offer just in case anything microscopic had escaped! Recovery has been ok so far… can’t drive so that’s a pain but hubby has been fantastic… even on the pink jobs !  Have a fab weekend xx

  • Aww, I'm so glad you have had good support. I would nuke it if it were me, just in case. You're post menopause, yeah? So it's not like it's going to take your cycle from you. But I guess HRT is out of the picture for you and yours as ovarian cancer is so prominent.

  • Yes that’s what the consultant said tbh… if they offer anything take it! Yes I am post menopause but having dreadful night sweats, which I never had before… anyone else had similar issues after hysterectomy? Have a fab bank holiday Monday x

  • I had night sweats for a few weeks after my hysterectomy in 2013. I kept my ovaries but it still sent my body into a spiral hormonally as I was only 30. They did settle down though. Hope yours do too!x

  • Thanks hun, I am taking supplements that may help but so weird as wasn’t expecting it!  

    I am sadly a little older than that…

  • I've been post menopausal for 3 years now, and my hot flushes and night sweats had already started to settle down. As well as the dermoid cyst, I chose to have my ovaries and fallopian tubes removed, and wondered if my symptoms would reappear. I actually think they're even less noticeable than before, so I'm quite relieved about that. On the other hand, every time I forget something or look in the mirror and see more crows feet around my eyes, I automatically blame it on having no ovaries anymore! My husband finds it most amusing and keeps saying "is that because you've had your ovaries removed?"

  • I didn’t really suffer at all when I went thru the menopause but since Steve was removed it’s something else! The heat is awful not helped by the warm nights! I will see what I can find naturally on dr Google and that! My hubby wants me to get a noob job now as I have list 16kg since this started … mostly boobs… men eh!!

  • An update on my not so little friend had my consultant appt was referred to the MDT who have decided I need a CT scan with contrast no explanation why just got a call to book an urgent one whilst I away which I can’t do. The poor girl booking me in couldn’t answer my questions. The consultant I saw made it sound so simple but now I am wondering what the experts have seen on my ultrasound and mma is  more oF a concern than they are letting on. My CA125 is 42. Either way Gemma at nearly 9cM has to be removed surgically they can’t leave it in. I am freaking out on holiday now why a CT not MRI CT sounds so much more serious. God why is this happening to me I have my sons wedding in 9 months

  • It's reasonable to be upset. Mine was over 10 cm with similar ca125 but it wasn't cancer. They treated me to both MRI with contrast and CT with contrast. I think they can see different things clearer on each type. It wasn't cancer for me and I hope it won't be for you. Deep breaths, you've got this x

  • I think you're still more or less following the same path that I was on, and you'll continue to be treated as urgent until they've had a good look at everything. I don't think you should read too much into the decision to do a CT scan rather than an MRI. Either method will give them the same information, but what I do know is that a CT scan costs less than an MRI scan, so maybe that's the reason. X

Reply
  • I think you're still more or less following the same path that I was on, and you'll continue to be treated as urgent until they've had a good look at everything. I don't think you should read too much into the decision to do a CT scan rather than an MRI. Either method will give them the same information, but what I do know is that a CT scan costs less than an MRI scan, so maybe that's the reason. X

Children
  • Any word on your histology yet? That’s me 9 weeks since surgery and not a thing. I tried to chase after week 6 and my gynaecologist was off on bereavement leave. I’m hoping I won’t be waiting much longer. Just want to not think of this anymore! 
    how’s your recovery? I’ve been pretty much fine for weeks, occasionally if kneeling or bending in half I’ll get a wee sharp pain, I forget that I could still have internal healing going on! X 

  • Hey, lovely to hear from you. I'm the same. 9 weeks tomorrow and not a thing! I'd like to think that if they were concerned about anything, I would have heard from them by now. My recovery has been good. The only thing I have occasionally is a little tenderness in my belly button area. I agree that having the whole thing finally crossed off and finished with will be a big relief. Why does the hospital always say 2 weeks when you ask them about results? It's clearly a load of rubbish! X

  • Oh well at least we are in the same boat. I hope that no news is good news too. I think my pain is from the ovary reconstruction, I hope so anyway. It certainly feels exactly where I imagine my ovaries are now they are not welded to my other organs. Haha. 
    how is the lump area you had on your belly area after surgery? Has that gone away?x 

  • I had both a lump and pain in the early months. Both cleared up but I think I have minor adhesions as when I'm constipated I get pain where my ovary was.

  • The lump is gone now. It was just swelling from the operation that took a while to settle. On saying that, I wouldn't mind a flatter stomach. Going through the menopause definitely changes your shape and losing extra pounds seems to take forever! I'm far from overweight, but if I put my jeans on and they feel a bit tight, it puts me in a bad mood! It won't stop me hitting the wine this weekend though! X

  • Glad to read it’s all come down now! Let me know when you get your histology, hopefully won’t be long for us x 

  • Got everything crossed for you and jembers' results.

  • Thought I'd update folks on what's happening with my life if it's not too obtrusive on this thread. My (now ex) partner has pleaded guilty to coercive control and other things DV related. He's in remission and I feel terrible that this might set his recovery back but I'm not sure how lenient I want the judge to be. Now I'm out of the situation I can see clearly what it was. I still empathise with his struggles (and that hurts) but the impact the stress of living under his control had on me was causing so many problems with my own health and life opportunities. I gave him as much as I could, it was never enough and I'm frightened of him.

    Sorry, this is probably completely out of the blue to you guys as info, but the other woman thing was just the top of the iceberg.

    Hope I don't derail the thread. You all have enough on your plates x

  • Wow! I know I've never met you in person, but I'm really proud of you! You have been so supportive on this thread, and the whole time you've had this hellish situation going on yourself. It's time to start living again. There's nothing you can do to change the outcome of his future, but there's lots you can do to change your own! Well done. Massive hug from me. X

  • Thank you. I’m almost certain we are going to be ok, surely they would have been in touch by now, but also until you see it in black and white I just can’t quite close this chapter in my head. Thanks for your kind thoughts x