Starting the next chapter - 2 complex ovarian cysts :(

Posted , 2 users are following.

Hi everyone. Just been reading all your cyst stories and getting a lot of hope from them so firstly

thankyou for that smile

I had a couple of weeks of a wringing style pain in my lower abdomen in mid December and a

period that was 2 weeks early which was out of the ordinary for me personally . My GP

first diagnosed me with IBS and then piles(?) but thankfully a locum referred me for a US scan

which showed I had 2 complex ovarian cysts on my right ovary. A CA125 also came back elevated but my GP said because of my age etc this is not a definitive marker even though it still really

has frightened me.

Ive been signed off work the whole time as the worry is taking over my every thought. I cant stop

worrying that I am close to the end of my life.

I am due a follow up scan this week to see if cysts have changed/grown etc and then I suppose

they will take things from there. Im worried about what they might find but am just as equally

worried that if there is no change sizewise they may decide to leave them there for another 8

weeks!

Im so nervous today about this coming week. Sorry to be so negative x

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13 Replies

  • Posted

    Sorry don't know what I did to leave all those gaps in my message! I forgot to mention im 39 x
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  • Posted

    I can understand why you're worried but, on a positive note, they have scanned you and are going to see you again soon. However, there's nothing that will allay your fears until you've seen the doctor again and talked about the options. If there was something that indicated major cause for concern, your doctor would have most likely said that they would action something quickly...so hold onto that thought. By watching and waiting until the next scan, I'd like to think it shows that they think it's more likely to be non-cancerous.

    They sound very efficient, by arranging two scans for you, so remember you're in good hands. I don't have any experience of ovarian cysts in general as mine was a dermoid cyst - after my ultrasound scan they thought it was 5cm and could be left until a later scan, but the later CT scan showed that it was larger than that. If they want to carry on watching and waiting, tell them how scared you are and ask what they can do if you want to have them removed. Tell them what effect it is having upon you.

    Good luck and will you let us know how you get on?

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  • Posted

    Thankyou Janie Mac. I know doctors can never be sure until they remove these cysts but am trying to hold on to the thought that it cant have looked completely menacing for them to leave it there. To hear you say that also is a reassurance.

    Did you know your dermoid cyst was a dermoid before it was removed? Could they tell that much from the scan?

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  • Posted

    Hi

    No - I was absolutely terrified after the ultrasound as all the radiologist would say was that there was a non-vascular solid growth on my right ovary. When I asked him if it could be anything other than cancer, he said it was unlikely. It was the CT scan, that I requested asap (as I had private insurance) that showed the growth was likely to be a dermoid cyst as there was bone within it.

    So I can really empathise with what you are going through at the moment. I was imagining the worst, as I think my brain was trying to prepare me for the most terrible option. I wanted to know the truth, whatever it was, and the waiting was the most difficult part....the nurse told me that that would be the case as well. She had said, at least when I knew I could make plans and learn what the various options were.

    Keep in touch.

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  • Posted

    Sorry - I should also have said that I didn't see a gynaecologist until after the CT scan. A urologist had sent me for the ultrasound so it was only after the growth had been seen on my ovary (during the ultrasound) that I had a referral to a gynaecologist.
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  • Posted

    Yes I have learned already that its the uncertainty and waiting that's the worst of all. I too am preparing for the worst.

    I think if they decide to watch and wait any longer when ive had my scan this week I will pay to have a CT scan so at least I can get a little peace of mind by knowing. Thankyou for your help smile

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  • Posted

    If you do decide to do that, an MRI scan may be better - my gynaecologist said he didn't understand why the radiologist recommended a ct scan as an MR I scan would have showed the growth more clearly. I'm certainly no expert so ask which would be best for you.
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  • Posted

    Ooh ok. To be honest I was under the impression they were the same thing!
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  • Posted

    Well I had my follow up scan this morning and the lady scanning me informed me that by the looks of things both cysts are slightly (but only slightly) smaller. The hospital should review the scan tomorrow as they have a once a fortnight review clinic.I have no ides what they will decide to do with me now!
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  • Posted

    Thanks for letting us know.

    Did she say how what size they are? Are they going to get back in touch with you following the review tomorrow or do you have another appointment booked?

    Sorry for all the questions!

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  • Posted

    No problem.Ask away!

    She didn't say yesterday but I know at the first scan they were roundabout 5x4cm each. Im going to my GP tomorrow to see what the review team has decided for me. Just have a feeling they may try leaving me for another 6 weeks sad

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  • Posted

    So I have an update but am now even more confused!

    My cysts were still there but had each shrunk by about a cm. There was now a 3rd tiny cyst too. I had been waiting for the MDT groups decision on what to do with me and have just been told they have decided 'no further action'! Um what about the fact they are complex? My GP offered to write them a letter saying surely there must be some kind of follow up planned but by that point Id had enough so am going privately next week. Very confused sad

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  • Posted

    A second opinion sounds like a wise move, awaywiththefairies. Please let us know what that person advises you to do!
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