Huge, complex cyst with septations and nodules

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 I have a 17cm complex cyst with septations and nodules. The gynecologist yesterday became visibly concerned when she read the radiology report that said nodules and immediately sent me to get a CA-125 test. Im 24. The cyst has grown rapidly and she said it is most likely germ cell cancer that is borderline which means that once its taken out, I should be fine. Of course I have to spend the next month sitting around worrying while they send me to different people and finally set a surgery date.  I wish they would just schedule surgery and an oncologist could take it and the ovary out.  It is terrifying to say the least, I feel sick to my stomach. If anyone has had anything like this, please let me know.

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  • Posted

    Hey,

    I have 9cm cyst which looks simple- I only found out last weekend as ended up in a&e in so much paand I'm only 23. I had the CA 125 blood test and mine came back within the normal range. 

    I am awaiting a ct scan and then I'll see the doctor again and find out what is happening. 

    I can understand to a certain point and I'm are you will be ok! I know it's hard all the waiting and that's what I'm really struggling with is all the waiting right now. 

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    • Posted

      Yes, the waiting is the worst. You're incredibly lucky that its simple. Honestly, you're fine. I am the one that has the s****y prognosis. Do they want to operate? Good luck and keep in touch. Being in touch is helpful. 

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    • Posted

      I have only been told from ultra sound it looks simple and that's what is on my discharge paperwork to me and my GP. I am still so worried it's cancerous even though so far all my bloods normal including tumor markers but doesn't stop me from worrying- I think it's the whole waiting thing and knowing I have this 9cm cyst in me which I want out asap! And yes it's looking like I will be having an op. 

      I'm concered as they want ct scan but don't know why they would want one?? Medics said it's unlikely to be cancerous but I'm still so worried despite bloods are back and medics are saying it looks simple. 

      I really hope everything is ok with you. And please stay in touch!! 

      Xx

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    • Posted

      Try not to worry. You're going to be fine. You have nothing at all to worry about. Believe me, I hoped I had nothing to worry about for weeks and I have continually been given all the things to worry about. I don't know why they would want a CT scan either, try to get out of it, that amount of radiation is terrible for you. 

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    • Posted

      How long did you wait to find out how bad it was? Also I have a issue when I go to wee my bottom of my tummy hurts is this just becusse of the size of cyst? 

      Xx

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  • Posted

    Hi I had a large 30cm fluid filled cyst removed just before Christmas and am due to get biopsy results in the next few days. I was really apprehensive as it’s big surgery but the recovery has been fine. I actually felt better having had it removed as it was so heavy and was affecting me internally.  They were able to get it out whole so hopefully even if the tests are not good I can avoid chemo. I have a 28cm vertical wound which is healing unevenly but nicely and am doing really well. I had very little pain as it was well managed in the first few days with internal anaesthetic and morphine and after just paracetamol for minor discomfort. After the op my surgeon was able to tell me he saw no sign of anything to give him concern at all everything looked healthy except the freaky cyst so hopefully I’m all done surgically. I was very nervous about it but tried to take it one step at a time ( I’ll worry about the results if needed when I get them) but in my case it has been fine. I found this forum very good too, realising how many others have gone through the same thing xx
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  • Posted

    Hi I had a large 30cm fluid filled cyst removed just before Christmas and am due to get biopsy results in the next few days. I was really apprehensive as it’s big surgery but the recovery has been fine. I actually felt better having had it removed as it was so heavy and was affecting me internally.  They were able to get it out whole so hopefully even if the tests are not good I can avoid chemo. I have a 28cm vertical wound which is healing unevenly but nicely and am doing really well. I had very little pain as it was well managed in the first few days with internal anaesthetic and morphine and after just paracetamol for minor discomfort. After the op my surgeon was able to tell me he saw no sign of anything to give him concern at all everything looked healthy except the freaky cyst so hopefully I’m all done surgically. I was very nervous about it but tried to take it one step at a time ( I’ll worry about the results if needed when I get them) but in my case it has been fine. I found this forum very good too, realising how many others have gone through the same thing xx
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    • Posted

      Thank you for this. Yours was entirely fluid filled? The thing about mine is that it is complex with these nodules that seem to give everyone worry. Yes, its helpful to hear stories. All this feels so shocking, and scary. The waiting is definitely the worst part, I just want it out. Did you have yours removed by an oncologist? 
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    • Posted

      Reading yours has helped me a little. Not sure if you saw my post, I have a 9cm cyst they said from ultra sound looks simple, I had CA 125 tumor markers blood tests and all in normal range but I'm still worrying so much. I need to have a cyst scan and then I'll see doctor. 

      But I am getting pain when I go for a wee- so my tummy

      Hurts when I go- is this just because of the size of it? 

      I have found this forum so good

      So far! I wish you a good recovery and keep us updated about your results! 

      It's good they got it out whole! 

      Xx

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    • Posted

      My consultant is a specialist in gynae tumours. Yes, simple cyst, appeared fluid filled and on ultrasound appeared to have adhered to womb and bowel but luckily  ct showed otherwise. Still waiting for the report on the exact contents though. It weighed 17lbs so am a bit worried there may have been more than appeared on the scans.Op was only on 18/12 so the holidays have interfered and left me waiting and wondering. Complex cysts can be lots of different things though so try to stay positive.
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    • Posted

      Hi, I had suffered from awful period pains and a touch of IBS so I didn’t actually recognise my cyst symptoms as being different from my normal pain, but yes as it grew it pushed my bowel, bladder and stomach. So I got treated for IBS and reflux etc instead of ovarian cysts! Also I had back pain and sciatica which I blamed on having two pregnancies close together. Since the op my back pain has gone and bowel and bladder symptoms all gone. If you can convince them to remove it or drain it by way of keyhole surgery before it grows you should definitely try.  
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    • Posted

      Also it was the ct scan that showed that my cyst hadn’t  developed any links to other organs or adhesions, that there was no link to any blood supply other than the ovary. I think it gives a clearer picture of the appearance of the cyst, fluid shows black, but if there are other cells are gray etc
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    • Posted

      I have IBS as well. I've only had this pain when I wee in the bottom of my tummy a few days so I'm guessing becusse my cyst is 9cm that it is pressing onto my bladder now?? 

      I have to have a ct scan in 2 weeks which still waiting for an appt and then back to see doctor- they have already said about draining it or having a op but won't know until I see the doctor again. 

      All normal bloods are normal range and even CA 125 tumor markers and the other bloods with that are all in within the normal range which is good. And hosptail said it looks simple which is on my discharge paper work and it says simple on the paper work which went to gp but I am still so worried about it being cancerous. I have been getting myself into such a mess.. do i really need to if bloods all normal ect ? 

      Just don't understand why I got to have ct scan xx

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    • Posted

      I can only talk about my own experience but as far as I know, yes, my own gp made the referral immediately after the ultrasound  then the consultant and pre-op assessment and decision on scheduling the surgery all depended on the ct. My cyst was very large though, 30x30cm and they needed to see the position of other organs etc, that tissue from the cyst wasn’t growing into other tissue. My whole treatment from diagnosis was red flagged  and it was approximately 10 weeks from diagnosis to the operation. Based on the ct my consultant moved from recommending total abdominal hysterectomy, removal of both ovaries, cyst and appendix to just the cyst, one ovary and the appendix. I know someone mentioned radiation as a concern  and that’s very valid but personally I would rather have the minimal exposure of a ct scan to give surgeons the best information they can get rather than them being confronted with surprises during surgery or not being able to identify the best course of treatment. Every case is different though so I would say phone your GP or consultant and ask them to explain what and why they recommended it. Xx
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    • Posted

      ca125 is not a reliable diagnostic tool, that's probably why they are doing further tests. you markers could be elevated due to infections, benign conditions ect or completely normal even if something is wrong... so the blood work doesn't say much, i guess they only do it as part of a routine and to try and pinpoint what it could be. it's good that they investigate further, it may just be that they worry about other complications with your cyst due to its size rather than it being cancerous. Try not to worry, I'm sure you'll be fine, a simple cyst is very good  news and don't read up online. You only get yourself worked up. 

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