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

  • Mine too tbh, my sister is still in hospital too so a lot going on , thank u for thinking of me too, hope you are ok too x

  • I've got some slight heart arrhythmias and still got a bit of swallowing trouble but the weird letter that I was copied into by the gastroenterologist didn't seem to think my hernia is a big deal so I don't know what's going on really. See the GP next week so I'm going to query exactly what might be causing it all other than middle age. Not had a proper consultation with anyone but been prescribed beta blockers which I haven't started taking because I have asthma and other meds and I'm wanting reassured it's all okay together. Thanks for asking x

    I'm glad treatment looks like it might commence soon for folks on here but it feels like it's all taken a bit long really though good you had a holiday!

  • Hey Lyns12, hope you get some decent feedback from the GP next week. I don't know what's worse sometimes, having a definitive diagnosis of something that might be worrying or having troublesome and persistent symptoms that are relatively harmless! Good to hear that some of our cancerchat buddies have got dates now for surgery. I'm still waiting, but thankfully, I'm not quite as stressed out as I was at the start. I will no doubt be back on here soon looking for reassurance when my operation dates finally comes through! Hope you're doing ok and don't forget, I'm always here for a chat. X

  • I hope everyone is doing okay and the hot weather has been manageable this week. I wanted to thank everyone for their support once again. I've been to see the consultant this morning and he's fairly sure it's a complex cyst (but no hair and teeth). I've been listed for surgery today and they expect it to happen in the next few weeks. I appreciate that everyone keeps sharing how they are are doing.  Take care all. X

  • I know how that feels hun! My operation is on 15/7 let us know when yrs is … we can compare scars! Have a great weekend all x

  • I think we are all in the same boat … but remember we are going to get through it xx

  • Hi Calyxa, thanks for your lovely message, I will be thinking of you on the 15th. I agree we can all compare scars. I'm looking forward to being less bloated and see my toes again. I hope everyone is having a relaxing weekend x

  • Welcome to the complex cyst club. I’m pleased to read that and hope that’s given you some reassurance. Do you have symptoms that are causing you to be taken into surgery so soon? Or know its size? I only ask as most of us seem to be waiting months, perhaps ypu are not in the uk? 
    my surgery is on the 9th, not tomorrow, the best day. I am very nervous. Mostly about the recovery. I am a single parent and I am being as organised as possible but I only have help with him for 3 nights and then I’m on my own again. Hoping I can drive again as he has lots of activities and school is out for the summer! 
    annoyingly I have started to cough in the last day, I hope it goes quickly so I’m not coughing when I’m sore! 
    I’ll update when I’m out! 

  • 1 week to surgery! How you feeling? I’m getting nervous now! 

  • Trying not to think about it! My sister is still in hospital 6 weeks now… so that is occupying my mind but I think I just want to get back to being me.. and feeling better x

Reply Children
  • Your poor sister in for 6 weeks now. The mental toll of being on a ward is enough in itself, I really feel for her. How is she? You still on for next week? X

  • Actually not too bad at the moment, I think the new doctor is a little more positive and has given her hope , thanks for asking 

    yes I have pre op tmrw then go in 7am Tuesday… they have told me to expect 6-8 hrs in surgery and at least a week in hospital..I liked the sound of getting home sane day much better xx

  • I'm glad her new doc is more positive.

    I'm sorry it's such a long surgery. I will be thinking of you all day. I was in for 2 days but I was always told I'd be in at least overnight. It's hard being stuck in hospital or being told you will be but sometimes it's the right place to be x

  • Are you ok? Sending hugs. 
    glad your sisters new doctor is being positive. That will hopefully do wonders for her as it’s so easy to get negative quickly when dealing with medical issues. Understandably. Keeping everything crossed for your sister. 
    The good thing about bein is hospital is the medication. When I was taking a wee dose of pain killers I would blink and 3 hours had passed. So take them all! 
    will you be in the same hospital as your sis?x 

  • Absolutely, just want this thing out now as it’s limiting everything… just getting in the way of life  x

  • She’s up and down tbh, but since the new dr thankfully it’s up…as Lyns said sometimes you have to be in the hospital… fingers crossed the stronger chemo works luckily she isn’t in any pain at all… I think I might be as I am such a wimp! We are about 1.5 hrs apart …hospital wise but she may end up at mine if the MDT approve as she needs TPN and they train to be able to do at home x

  • Hey calyxa. Just wanted you to know that I'll be thinking about you over the next couple of days and sending you tonnes of positive thoughts. Your surgery sounds daunting and a long stay in hospital can't be much fun, but everything is moving in the right direction, and hopefully, once it's over, you'll be on the home straight. I fully appreciate that everything that's happened to your sister must play on your mind, but it doesn't mean you're in the same boat. I was just about to say take it easy, but you'll have no choice! Speak soon (no rush!) XX

  • Heh lovely ladies, apologies for the radio silence … it’s been a crazy few weeks … after a lovely stay in hospital (so hot!) I have been recuperating at home ( mainly in bed tbh!) and have lost a mind boggling 10kgs in 3 weeks ( not sure if that’s me being good or just ‘Steve’!)

    I had all my staples taken out over 2 visits to the GP but also have an infection which is now been checked every 3 days by the nurse… she’s happy today though so hopefully healing!

    still no news on biopsy but they did say 5-6 weeks so will let you know

    hope you are all doing well also xx

  • Ah so nice to read you are doing ok and at home, so glad Steve has been evicted and you are recovering. Sorry to hear you have an infection, sounds like they are getting on top of it though. Long may your recovery continue and enjoy the nice cosy time in bed while you recoup. 
    I went back to work today. Feels like this past month just went by in the blink of an eye!x 

  • Hi, so lovely to hear from you. 10kg!!!! Well, we knew Steve was a big boy, so hardly surprising. Also, I imagine after such a big surgery, your body will be using a lot of energy to heal itself, so maybe that's got something to do with it as well. Glad you're taking things nice and easy, although you probably don't have much choice right now. I think I might be forgetting sometimes that I've very recently had surgery, and I do find myself getting a bit achy and more tired than usual. I think for my type of surgery, the recovery time is about 4-6 weeks, and it's been just over 3 weeks now, so even though I keep trying to do more and more normal stuff, I keep getting physical reminders to slow myself down. Obviously, your recovery time will be significantly longer, so I hope you've got plenty of support while that's happening. Still waiting for my results, but fingers crossed I'll be able to forget about this chapter fairly soon. Take it easy and keep in touch X