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

  • Hi Cloudy, thanks for your message. I will be thinking of you tomorrow, keep us updated, wishing you a speedy recovery and that you can be out and about with your son soon. Easier said than done but do take it easy. I'm based in England, I think the requirement for the urgency for surgery for me is a combination of symptoms and because I was diagnosed with breast cancer only two years ago. With my BC I had no symptoms, just went for my first mammogram and that was how it was picked up. I'm extremely grateful that my surgery will happen so soon as I know several of you have had to wait for such a long time and all the waiting is really difficult. When I came around from my BC surgery the main thing I remember was it was the best cup of tea I had ever drank xx

  • My sister had breast cancer 5 years ago, sailed thru that but is now stage 4 with ovarian..not secondary weirdly but we have now found out that 1 in 3 with her type of cancer (triple negative) go on to get ovarian! Thank god yours has been picked up x

  • Just wanted you to know that I'll be thinking of you tomorrow. I'm hoping you'll sail through it and be back on your feet in no time, not least because I've got to go through it myself! Good luck xx

  • Thank you. I’ll let you know how it goes. It’s 6am now, I’ve to go in at 11am but not allowed to eat after 7am so up early to have breakfast. Hopefully I’ll be back out tonight. Will keep in touch. Looking forward to this being over! x

  • Good luck, Cloudy! I hope it all goes really smoothly and you get your wish. My surgery was during COVID so I couldn't have any visitors but I was in 2 nights as my blood pressure kept dropping. Apparently I don't like anaesthesia much. Eventually they decided to send me home as I needed to be on my feet to get everything working properly again. Stoopid body.

  • Thank you. I will stay in touch. I came into hospital at 11. They expect me to go down at 2pm and be getting out by 7pm. Fingers crossed! Ready for today to be over xx

  • That's so hard on your sister and the rest of your family. I've been lucky that it was picked up. I know ovarian cancer is tough. I hope the hospital is able to support her with the support that she needs. Sorry I'm a bit slow at responding, trying to fit so much in before I'm called. X

  • Hope you are doing okay Cloudy, thinking of you 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

Reply
  • 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

Children
  • Great news! Good luck for tmrw 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.

  • 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 

  • Cloudy...you are an absolute star! So glad you've got it over with. Thanks so much for the extremely useful advice. I've just been out and bought myself some new slippers and my dressing gown is in the wash as we speak! I was wondering about pads and also getting my shoes back on. I think I'll just keep my slippers on when it's time to leave. I'm going to wear a dress, not just because of the heat, but also for comfort around the middle. I'll take my Kindle to keep me occupied. Is it routine to have to inject yourself afterwards, or just because you're on the pill? I'll keep you posted. XX

  • I had to inject myself with blood thinners after my surgery and I wasn't on the pill. It wasn't so bad. Worst bit of that was i had a stroppy nurse who sulked when I asked her to demonstrate it to me. My blood pressure was so low I kept getting dizzy and I think she objected to the fact they kept the catheter in until I felt a bit better.

  • I only had a tiny bit of spotting after so far but felt more comfortable with one on and big giant pants, because the hospital bedding is so white! 
    the seamless dress around the middle is a godsend, I still have mine on! 
    yes for sure just wear your slippers, I had slider shoes, same thing really but you will be wheelchaired about anyway when leaving, so its only really to pop on to go to the bathroom/get in the car.
    kindle is a great idea too.
    I forgot to say I got dissolvable stitches and then a bit of glue over the top so I don’t need to go back or anything.
    the injections are only because I’m on the combined pill, I don’t think that’s something you will need.
    the nurse kept laughing with me because she was trying to teach me and I kept saying “1..2..3” and then don’t doing anything. It went on forever. A psychological thing, hardly felt it!
    keep in touch when you are out and ok, I’ll be thinking of you.
    what Time are you in?x  

  • Oh maybe I’m wrong. They just said I had to inject myself because I am on the pill.

  • I've got to be there at 7:15am, so hopefully I will be back home at a reasonable time. Thanks again, and to everyone who's wished me luck. X

  • I had bigger incision than you which might be it. Mines is about 5 inches long down from just below my belly button. No keyholes. I've only got one ovary left which they had to rescue too. I'm grateful not to have gone through menopause before 40 and it's still chugging away at 43 now.