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.

  • Offline in reply to Lyns21

    It's very kind and generous of you to keep checking in with us Lyns21. Many people disappear once they get the answers that they need and we never get to find out the full story. Essentially, we all join forums like this to find some reassurance, and even though we only get that reassurance once we know we're safe, it still helps to give us a glimmer of hope. Your circumstances have been difficult, but I'm so glad you were ok. x

  • I wouldn't assume your appointment has necessarily come sooner because your blood results have changed. My consultant told me I'd get my MRI within two weeks before she'd even done my blood test! So, either it's standard practice when their dealing with a large complex cyst, or mine looks dodgy!!! My MRI just says MRI pelvis with contrast. Just like you worrying about why is says abdomen, I've been worrying about why mine says "with contrast" Apparently the contrast helps show up the tissues more clearly. Doesn't stop me bricking it!

  • Oh mine isn’t with contrast. Isn’t it funny how we have very similar stories and symptoms but our treatment is different. 
    I have started to bleed in the mornings a little bit with so much pelvic pressure. I can’t figure out if I’m imagining the pressure or if it’s just always been there. 
    how are you feeling about your MRI? I hate them I’m so claustrophobic, but needs must. I’ll be panicking the whole time in there. 

    I wonder what will happen after then for us? Have you any idea when you are expecting to hear from someone? 

  • I'm not too worried about the MRI itself, it's what they might find that's terrifying me! I keep clinging on to the fact that the consultant said they think it might be a dermoid. However on my scan notes it says that the exact nature of the lesion is unclear and that a dermoid cyst is a possible differential diagnosis. I've looked up all the terminology they have used about it and a lot of it does point to a dermoid cyst, but who knows. I've read that an MRI with contrast is an excellent choice for diagnosing indeterminate complex cysts. They're also used to determine what type of treatment will be necessary afterwards i.e. keyhole or open surgery. Having a raised blood test is making me very nervous, even though I know it can occur for benign reasons. I think because I'm postmenopausal, I feel this could be more of a problem. I have no idea when to expect results. My letter from the consultant just says that they will write to me with the results of my MRI. My hospital appointments and results letters come through an app called MyMFT which is the Manchester University NHS foundation Trust. I'm sure other regions must have their own app too. I get emails to tell me when I have a new letter and then read the details via the app. I feel sick wondering what news I might receive. My appointment is at 10.20am tomorrow. I will be thinking of you. X

  • My MRI is 4pm tomorrow I will be thinking of you tomorrow morning. Keep me posted when you hear something after it. 
    I hate that I feel Xmas and new year are just inconvenient days that no one will be working this year, I wish I could get a bit more excited. Very hopeful to hear soon, although actually maybe not as perhaps that’s not good news.
    I am in the north of Scotland, we don’t get such a thing as an NHS login, I haven’t seen one letter or anything that’s been written, only one phone call from a gynae surgeon saying she had had a referral and needed a new MRi to see properly. I don’t know if that’s better or worse, I would do exactly the same and google every word written. I do feel very in the dark though. I am going to call the gynae secretary on Xmas eve and just ask if I am likely going to waiting until the new year.
    I had new bloods but no one has been in touch since then.
    fingers crossed for us tomorrow and that we manage to enjoy the festivities x  

  • I'll keep you posted. Make sure you let me know how you get on. Christmas is just this vague thing that's happening in a few days time. I'm not remotely interested in it and I'm lucky that my kids are both grown up and not expecting all the magic and excitement that they did when they were little. I'm keeping absolutely everything crossed for us both...including my stupid cyst!!! X

  • PS - Have you looked up something called Patient Hub? It's a portal where patients can get access to their medical notes and appointments etc. As far as I know, it's something you can join and securely log into to keep track of stuff. Could be wrong, but maybe have a look. X

  • Thank you I downloaded patient hub and it turns out my doctors isn’t registered so nothing there! 
    how did you get on today? I am just out, I ended up getting a contrast too. It just didn’t say on my letter. 
    she said a few weeks for results but I’ll call probably before the new year to ask next steps anyway. 
    glad that’s over I really hate an MRI I am so claustrophobic! 45 mins though and done. Hope we get some speedy answers x 

  • Hey, how you doing? I was told to arrive at 10:20am but got there 10 minutes early and at 10:45 I was still waiting! Eventually a nurse came to say they were running late and took me to another waiting area because they were going to do the scan in a mobile unit they have outside! Anyway, it was done within about 25 minutes. I wasn't give any indication of when I'd get my results, but according to the NHS website it's usually within 1-2 weeks. Fingers crossed it won't be too long. It's one of those weird situations where you want answers but you're also scared to get the answers. Keep in touch and I hope Christmas brings us the distractions that we both need. X