Multiloculated ovarian cyst, elevated ca125, very very scared

Last week had uss due to heavy, prolonged period in Feb. Dr rang day after with results, which had me panicking, said there was a cyst and was referring me to gynae to be seen in 2 weeks.

Of course was straight on google and the first thing that came up was urgent referral if gp thinks there is a chance of cancer! That was Wednesday, last week, Sat went to see locum gp at surgery to go over scan results as my anxiety levels were through the roof.

She explained to me that my ca125 was 35 and my right ovary has a multiloculated 10cm cyst.

Since then I have been in pieces, I'm finding it very hard to function, not eating, not sleeping. I have 4 kids and I am imagining the very very worst, there is nothing else on my mind, everytime I look at the kids I just want to start crying. My appointment at the hospital is the day after tomorrow, am absolutely dreading it, an operation will be a necessity but it is what they find while they are in there that is really scaring me. Just wish this nightmare would be over.


9 Replies

  • Hi Clare

    Not sure what I can say to reassure you but 35 is not that a high reading for CA125. I've always been told that anything under 37 is within normal range. It's so very easy to think the worse, been there done that got the T-shirt so to speak. Please keep writing your thoughts and feelings here it does help. I'm sending you a virtual hug from one who has been where you are now (though my CA125 was 689 on diagnosis and that was nearly 8 years ago), still here, still working full time and no evidence of disease. I wish you well and please let us know how you get on xxx

  • Hi Clare, Reading your post reminded me of how I felt two and a half years ago. I went into a blind panic and couldn't look at the kids without wanting to burst into tears. Please step away from Google, and ask advice from the wonderful ladies on this site. Your CA125 is still within normal range and you're in the system so just take one day at a time. I remember dreading my hospital appointment and I couldn't sleep the night before because I was so scared. I walked into the Consultants Office a bag of nerves but when I walked out I was feeling much better. My Consultant was lovely and explained everything to me in terms of what they planned to do surgically and what treatment would follow. he told me I was booked in for surgery the following week. I felt an immense sense of relief once I knew what was happening, so I spent the next week cleaning the house from top to toe, writing endless lists for the kids and hubby, and I also went shopping and treated myself to a new nightie and slippers. I think that once you've got a plan of action you will feel calmer. best of luck with your appointment and please let us know how you get on, big hugs, Kerry x

  • Hey,

    You're ca125 level is very low, so I wouldn't let it worry you. It sounds like it probably a cyst rather than anything sinister. When I found out I had a large tumour (15-20cm's) on my ovary, my ca125 level was 294 (and later found it had cancerous cells). But from your count I think you'll be fine. Don't let it stress you out, I'm pretty certain it will be benign. But even if it's not....the op will probably remove the entire thing in one go anyway (mine did). So you'll be absolutely fine :) xx

  • I agree with what has been said, your 125 is quite low so dont be worrying, it is probably just an ordinary cyst which will need removing that is all. These terms the medics put to things frighten the heart and soul out of us, Now go and make yourself a nice cuppa, give your kids and hubby a hug and everything will be fine.

  • Thank you for your kind words.

    Slept a little better last night but think that's mainly due to the fact im exhausted from lack of sleep over this past week.

    Have been awake since 5 though worrying, had a cry to the other half.

    Trying hard to be positive but then this wash of fear creeps over me and it is all consuming.

    Hospital tomorrow 😞 x

  • Big deep breaths, you can do this, just keep busy, it really does help xx

  • Oh dear Dr Google is so naughty. I was told on college course few years back that 70 per cent of Google is crap! I know you will be worried but you have been given some good advice here. Try to keep busy and please stay away from Google. It may be something so simple and I pray it is. Please keep talking to your partner ;friends ; anyone who will listen. There is always someone on here if you are having a bad moment. Sending hugs x

  • Clare - please don't worry yourself so much, to the extent that you are so ill.

    Hopefully the cyst can be removed easily and that it will be benign. It is a good sign that your cA125 reading is normal also

    So, I am sending you positive wishes for the visit to the gynae & remember not all cysts are malignant.

    Best wishes, Daisies

  • Thanks one and all, is helping being on here. Has been a long day so far, as kids are all at school, other half is at work.

    Now off to do the school run, which will probably get me all emotional, again!

    CA level isn't bothering me too much, as it is fairly low, it is more the fact that the cyst is a multiloculated one, which, according to google (I know, I know) has a greater chance of malignancy.

    Don't worry there has been no more googling for me since then 😊

    Looking forward to everyone being at home this evening and might have to have a cheeky tipple too 😉

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