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

  • Hey cloudy! I'm not expecting you to see this immediately, as you're no doubt having a well deserved rest. Hope you're feeling ok. I've just had a call this morning offering me a cancellation...for tomorrow morning!!!!! Bit of a shock, but I said yes. I won't sleep tonight, but I really want it out the way. X

  • Great news! Good luck for tmrw x

  • Funnily enough once we started mentioning 2nd opinions they seemed to look at her a bit more so fingers crossed we have a glimmer of hope x

  • Great news,  I will be thinking of you  x

  • That's good news! You will be fine in no time. It's nervy on the run up though.

  • Got everything crossed xxx

  • Oh that’s brilliant news. Go for it! Best to just get it done. I went into hospital 11am yesterday, I got taken into surgery 1.30/2. I remember waking up in recovery at 5.30 but thy said I had been there for 30 mins.

    My surgery was a bit longer than expected because my lovely surgeon spent lots of extra time and saved my ovary. I was discharged at 11pm but they only had to keep me so low as my bladder was very lazy and wouldn’t empty after the catheter. I was home in bed by midnight.

    The first 16 hours until this morning have been slightly unpleasant, the gas moving around my stomach is sore and strange but by no means unmanageable. I have just managed to make it downstairs and make myself some toast alone. I have 4 incisions, the only in my belly button is larger, that’s where they removed it from. My dermoid had long hair!! The surgeon showed me pics in recovery, but I was so out of it I don’t remember them. I have to inject myself with blood thinner for 2 weeks as I am on the pill. I got paracetamol, ibuprofen and dihydrocodeine to take home along with stool softener. I am signed off work for 4 weeks but she said day 1 and 2 are the worst and I should be nearing normal by 2 weeks. She gave me four weeks as my job isn’t the easiest. 

    top tips - take a wee bag with pads, lip balm, a book and socks to be comfy in the ward but wear slip on shoes, you will struggle to bend down for shoes! I wore a thin long dress and was sweating in this heat in the hospital! Put a pillow in the car for travelling home, front and back, the bumps in the road feel like craters when driving home. 

    any questions let me know but good luck, I promise it’s not bad. So glad it’s soon over for the both of us. Sending big hugs.x 

  • Hello, you will see above my message to jembers if you fancy a read through how my surgery was. Any questions fire ahead. Do you have a date yet? Hope you are ok and thank you for the well wishes x 

  • 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

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  • 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

  • Ha he definitely was… surgeon even took pics of him in full technicolour!

    Tbh I feel worse now than I did for a week in hospital… hubby took 3 weeks off but he went back to work yesterday, I can get around fairly easily but anything a little too vigorous and I know about it!

    fingers crossed for all our results… would be nice to close this chapter for sure!

    xx