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

  • Oh same, I google everything. We know we shouldn’t but almost too hard to stop myself. I seem to have run out if things to Google finally. I’m glad your MRI is before Xmas. At least that is a relief that it will hopefully get looked at between Xmas and new year, fingers crossed for answers very early in 2025 for us. 

    Was it a GP who told you blood results? Or a gynae? My GP has terrible bedside manner, albeit seems to be doing great at admin of getting me seen. I am so looking forward to getting an appointment with a gynae specialist. 

  • Hi, I got my blood test results from the hospital. The result has really worried me because even though I know that benign cysts can elevate your results, it also means a bigger chance of malignancy. I really don't know what to do with myself at the moment. I keep hoping that my lack of symptoms is a good thing, although now I know it's there, I keep getting aches and pains!! If I hadn't gone to the doctor with that tiny spot of bleeding, I'd would never have known about this and would be getting on with my life without a care in the world. Now I keep thinking I'm going to get terrible news and I feel sick with worry. Sorry to be so morbid :( x

  • You aren’t alone. Mine was found by accident and every day since I’ve known about it I can almost feel it inside of me. Every twinge I’m back thinking about it. I had no idea of it before then! It’s a horrible feeling and the days feel like months at the moment. The only thing keeping me sane is getting out, walking walking walking. In nature in every weather. No phone and just try and relax, even better if someone can come with me. 
    just know you aren’t alone. I’ll be checking in on you!x 

  • Thank you so much. I'll be checking in with you too. My husband is propping me up, although he is worried too obviously. I'm must stay off google and try to distract myself as much as possible. No easy though! X

Reply Children
  • Members I had to write in here to tell you I just got my MRI appointment through, it is the 23rd December too! I’ll be thinking of you, can’t believe same day. How are you feeling? 

  • Hey, was just thinking about you today and was wondering if you'd heard anything yet! I'm not going to lie, I'm a nervous wreck! There is not a single minute of the day that I'm not thinking about it. I've googled way too much and I'm just making myself sick with worry. I have the odd moment of calm where I tell myself to just get on with it and deal with whatever is coming my way, but this is swiftly followed my complete dread. I'm glad we're both getting dealt with swiftly, but I'm also scared by it. How have you been coping? X

  • It’s not until I have been in this situation I realise how awful the waiting game is. I have read stories on here of those who are diagnosed with cancer and then waiting weeks or months to find out what next and I just have this new level of empathy for everyone pre or post diagnosis. 
    The anxiety is consuming. I work, so there are bits of my day I am very busy which takes my mind off it but mostly every evening I am on Google. I need to stop it I know that! 
    I unfortunately don’t feel very festive at all, I just am so desperate for someone to give me answers. I have a little boy so I am trying to get into the festive spirit, my horrible brain sometimes thinks “not sure how many Xmas’ left” and terrible intrusive thoughts every when trying to remain positive. That’s the bit I’d find most exhausting. 
    Mine is also just shy of 8cm and the gynae said expects a dermoid too, but can’t be sure until the MRI or perhaps even surgery to know 100% if the MRI doesn’t tell them enough. I know it will need to come out anyway, crazy that in best case scenario I would just be delighted to get surgery for a huge cyst! The things we dream for now! 
    sending hugs. Do you have family support?x 

  • Oh ps I got my bloods redone Wednesday last week, and they have called me today for the MRI. No one said what the levels were, but I can only suspect something if they have called me today for an appointment on Monday. 

  • You and I are sharing the same brain at the moment I think? I do have family for support thankfully and I can't imagine how much harder it must be to have a young child to look after and work to deal with. I sometimes think I'd be better off if I had work to distract me a bit, but my husband says he's found it impossible to concentrate when he's in the office. How about yourself, have you got anyone you can lean on? X

  • I'm following you both just now and wishing I could fast track the answers for you both. I remember having a 3 year old and a 6 year old thinking I wasn't going to see them grow up and worrying where they'd end up as their dad already had melanoma. He's doing okay on pembrolizumab though. Cancer journeys are all so different. I know it's hard not to focus on the worst possible outcomes because they are often over represented in the information available but that's not the full picture. I'm wishing you both some distraction over Christmas and good news in the new year. Take care of yourselves and I'm glad you have found each other to share with even though I'd rather neither of you to be going through this.

  • I’m actually grateful for the distraction. I might not be doing a very good job in work but I’ll figure that out later. Haha. 
    I just opened my MRI letter and it says abdomen and pelvis. I thought it was just going to be pelvis so I’m now anxious they are looking to see if something has spread. I am such an overthinker! It’s so unhealthy! 
    yes I have a ridiculously positive partner who is great at keeping me going but also driving me mad sometimes as he just will not focus on the possibility of something being wrong. My best friend who is checking in every day and my mum also knows. I haven’t told anyone else, I don’t want to until I get further info. I need to know what I’m dealing with first before I have to speak to anyone else about it! X 

  • Thank you, a very sweet message. Fingers crossed for good outcomes but it is actually nice to have someone and somewhere to share experiences. I am very appreciative of this outlet and to have people to reach out to. 
    what is your story lyns21 that brings you on this topic? Do you have ovarian issues? X 

  • I had dermoid cysts that they thought were cancer. I was offered hysterectomy but opted to wait for biopsies which showed no cancer. It was a really difficult time as the doctors were so concerned based on the scans and blood tests. But after surgery to remove the larger (my whole ovary had turned cystic) and smaller cysts they found it wasn't cancer.

  • Oh that’s great news, I find that quite reassuring that even with bloods and tests and concerned doctors that it was a good outcome. I love to hear positive stories! X