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

  • How is your recovery going now? I think really day 10 I turned a good corner. Yesterday I wore trousers for the first time, I feel like every day I have “firsts” since surgery and that’s how I mark my improvement! My stitches still have glue over the top and it’s not fallen off yet although it’s starting to come away. I’ve been told I can have a bath after 2 weeks so I am so so excited for this on wed night. I am managing to sleep on my side now. I tried to hold my 3 month old nephew on Saturday, that was a mistake. He’s 12lb and it was just too uncomfortable so even though I was just sitting, trying to adjust him etc was too much. Hopefully another few days and I’ll be able as he’s only visiting for 2 weeks. I went out for dinner last night. That felt like a real treat and I almost felt normal! It’s been a while since I haven’t had this cyst in the back of my mind, so that was lovely. Hope you are well on the mend x 

  • Hey, how you doing? It was 2 weeks yesterday since I had my surgery and I think I've been doing pretty well. I'm starting to resume most of my usual activities and have been feeling better every day. I'm trying very hard to remind myself that the inside will need longer to fully recover than the outside and not to get too carried away. My stitches are still there and I hope they dissolve properly over the next couple of weeks. The main thing I'm waiting for is my histology results and to get confirmation that everything is benign. Hope everyone who follows this thread is doing well. Keep in touch. X

  • Hello.
    Glad to read you are doing ok and recovering well. How is your lump above your belly button that was annoying you? 3 of my scabs and glue have come off. 1 still has it so I am yet to have that bath I was excited for! I am pretty much back to normal now but do keep getting short sharp stabbing pains in the area of my left ovary, a good reminder I am also still healing internally and need to not get too carried away with normal activities. I’m on day 17 of recovery and so glad I took longer than 2 weeks off work.
    also still awaiting those results, I got my letter from the hospital with the record of my surgery. Lots of info in it which I’m so glad they wrote out as I do not remember hardly what the surgeon said to me after surgery so was great to read everything that went on. She had to reconstruct my ovary as it was stuck to my bowel with the cyst adhesions, so she had to seperate my ovary too. Hence the 3.5 hour surgery. 
    Fingers crossed for this to be the end of this chapter for both of us. Let me know when you get your results and happy healing x 

  • Well ladies I am so glad I have found and read through this whole thread hearing your stories and seeing how supportive you are of each others journeys is wonderful. My journey began June 19th with a call from my GP my CA125 (which I didn’t know he had tested as I went to him with menopause symptoms and low mood) was elevated at 45. He referred me for an ultrasound. Had the ultrasound yesterday 29th July both abdominal and Transvaginal. I received a text from my GP today saying they have found a complex cyst on my right ovary suspected dermoid cyst but I have been referrred on 2ww pathway to gynae for further investigations to rule out anything sinister. Well my mind has gone into overdrive and panic mode. Scared of what’s to come what will be done and what it could be …. What comes next ? How long does it take? So many questions and no one to speak to but now I have found this thread and it’s given me some comfort. Thank you. I hope you are all healing well and looking after yourselves. I doubt I will sleep tonight not knowing for sure now there is something inside me that could be sinister. 

  • Hi there. Your story sounds very much like mine. I had post menopausal symptoms that I was concerned about, and was automatically put on an urgent 2ww referral for an ultrasound (abdominal and transvaginal). The last thing I expected was to be told I had a large complex mass. Just hearing the word "mass" completely terrified me. Right from the start, they thought it was probably a dermoid cyst, but continued to keep me on the suspected cancer pathway until further tests had been carried out. It was at this point that they did the CA125, and when I found out it was raised at 51, I really started freaking out. The only bits of information I could focus on were the sinister bits. This all happened at the beginning of December and I didn't find out what I was dealing with until around 9th January. It was the longest wait of my life! The MRI scan confirmed a dermoid cyst and I was finally removed from the cancer pathway. I think from reading other people's stories, it seems that if they think you've got a dermoid cyst, then you probably have. All the other tests are just extra reassurance. At the time, it feels like all the other tests are being done because something terrible must be happening, but it's just procedure. It's taken a long time to get my surgery and I've still not had my histology results back, but I'm healing well, I'm not in any pain and I'm basically back to all my pre-surgery activities. I was actually given the option to have no surgery at all and just monitor the cyst over time. At my age, I decided to just get rid to reduce any future issues. The additional procedure to remove my ovaries and fallopian tubes took no time at all and I was back home by 2pm! Try to keep reminding yourself that they think it's a dermoid cyst. They are most commonly found on the right ovary, they can cause raised CA125 and they have quite distinctive characteristics on ultrasound and MRI scans. They are also almost always benign. Take it easy and let us know how you get on. X

  • Hi cloudy, just reading over this again, I hadn't realised your surgery had taken so long! Glad you're doing well though. My belly bulge has reduced now thankfully. I've had one stitch fall out, but the others are still hanging on. I've been told by my doctor that this is normal and they will probably come out over the next couple of weeks. I've managed to book a city break to Porto in November. Can't wait! X

  • Thank you for taking the time to reply and easing my brain as to what will happen next. I go on holiday in 3 weeks so hoping to be seen before then. Your journey does sound like mine as do many others so I will keep that in my mind it’s a dermoid cyst. My best friend named it Gemma already why I do not know trying to keep it light hearted I bet. Sending you healing thoughts and thank you again x

  • Lovely to hear you have booked a trip! That’s great news. Glad to hear your bulge has gone down. I am pretty healed now, back to full health and no pains unless I lean on a counter or my baby nephew kicks me when holding him. I have a couple of small stiches still poking out but my incisions marks are now so small, all the glue has gone and just waiting for these stiches to disappear. Back to work next week. Still awaiting histology results of course, hopefully not long now x 

  • I nicknamed mine dermot, I think I read it on another forum and it made me laugh so that was its name until eviction day. 
    As you have read through the thread you will know our stories and where we are. it’s a real positive to have already been told that it’s a complex cyst. I would assume next stage for you might be an MRI but maybe not if they can see it well on an ultrasound. I got my MRI as they weren’t sure what it was and also to determine what could be saved and what couldn’t. Funnily enough I was told that I would certainly lose my ovary and then the surgeon saved it in surgery so you can only tell so much  until they are in there in person. Did they tell you the size of your cyst? That will determine some of your plans moving forward too whether Igemma will also be getting evicted! Mine had long hair, I don’t know why I find that so freaky!x 

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  • Hello ladies,

    I posted on this thread earlier in the year but dipped out as I thought my issue was resolved.

    I had my first MRI in June which showed a 35mm cystic lesion pressing against the ureter and overlaying the obturator muscle. This is very confusing as they removed a larger mass during my laparotomy which was benign. The MRI report suggests that this is the very cyst that showed up on the CT scan in December which kicked this off. It also has malignant looking features.

    So I'm back to square one as they aren't sure they got what they thought they were getting?! 

    I'm awaiting a transvaginal ultrasound guided biopsy. Had two failed attempts already - first of all they ran out of needles so couldn't do it. The following week I was all ready to go but I found it incredibly painful so I'm having it done under GA instead.

    What a palaver!

  • Goodness what a palaver indeed. To get a laparotomy and didn’t get the thing they went in for! What a shame for you. So glad they seem to be trying to resolve and quickly though. Can I ask - why are they bothering with a biopsy instead of removal? Especially if you are being put under anyway? Hope you are ok x

  • They know they went as far as they could with the surgery due to me already having extensive pelvic adhesions. So if it was there during my op, they certainly couldn't see it or get to it.

    They are honestly a bit clueless about it but thought doing a biopsy in a less invasive way would suffice and spare me more surgery. 

    If they can't get the biopsy this way they'll rescan me with MRI asap and go from there 

    I'm ok, just a bit fed up with it going on for so long now. I'm hoping they'll get to the bottom of it asap.

    How are you doing now?x

  • Keeping everything crossed for you. That all makes so much sense. It must be very hidden with adhesions for them not to be able to see it. Keep us posted on how it goes. 
    all fine here, still waiting on histology results but feeling very well recovered from the actual surgery x 

  • Thank you i have had my Fast Track cancer referral

    confirmed on the NHS app today so hopefully see someone before I go on holiday on 20th August. I just can’t think straight but guess that’s normal. Omg your Dermot had long hair that is freaky. How long does the histology take normally ? Sounds like I am in for the long haul here.

  • Hi, I'm sorry you're in this boat. It takes about 4 week+ generally. It's the worst wait. It's horrible. We're here when you need support so if you have a wobble definitely post about it. The ladies on this thread are so very kind and cloudy, in particular, responds really fast (not to put pressure on you, cloudy.)

    Offering a big virtual hug  

  • Oh, Jeh, this sounds so difficult to be living through. If it's any comfort to you (and doesn't gross you out too much) the malignant features in my cyst were teeth and they made my cyst look like it might be an immature teratoma.

    I'm up in the middle of the night so I'm only half following what people have written but from experience speaking with people with adhesions they're hard enough to deal with without them affecting the diagnostic options the doctors decide. I think I've got some minor adhesions as the internal scars are uncomfortable when I have a bowel transition but I've known people who suffer pain with them.

    I really hope the docs get their finger out soon and figure out a good course of action to get the necessary pathology. Doing the cancer limbo shouldn't take so long and I'm sorry x

  • Haha no pressure at all, I’ve gone from working 3 jobs to being signed off for 4 weeks so I have another few days with lots of time on my hands. How are you doing? Is your eating getting easier?x