Indeterminate ovarian cyst - so scared

Posted , 4 users are following.

Hey, I’ve been reading lots of posts and wanted to write my own. 

A brief background, last year I had two ovarian cysts. One on my left was noted as complex, and another on my right attached to my pelvis. When I had surgery they chose to remove the right sided mass. I had no further follow up, although I had to continue visiting the GP for pain relief. 

In February this year I had an ultrasound following a miscarriage, and they simply said there was something. I was offered a repeat ultrasound 8 weeks later. 

I went to a&e nearly 2 weeks ago and the cyst on the left is still there and now I saw it written as indeterminate. It has projections growing on it, but is less than 5cm. My ca125 was normal. They’ve taken it to MDT and I find out more on Tuesday. In the meantime, I’ve googled absolutely everything about it and got myself into a complete state. I’m 34 and have a 6 year old. I’m completely terrified since everything I read suggests cancer. Finding it so hard to parent when I’m completely breaking down. 

Does anybody have experience of an indeterminate cyst, or with projections? I’m so scared and feel so alone with it. 

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12 Replies

  • Posted

    Hi Hun

    I know it's easy to say but  please stop panaking,it really means they don't know..... they never do, believe you me I know.

    As your CA 125 is normal that's fantastic news, they probs just what  a specialist opinion so they don't miss anything, they have to be on the careful side to protect you . Try to take a step at a time, reading the internet will just scare you to death.

    Wait to hear what the professionals have to say.

    Take a deep breath and try to enjoy your weekend. 

    Wishing you well 

    Xx

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    • Posted

      Thank you for your reply. I’m trying to focus on the positives, normal bloods and that they saw it last year when they operated and left it... the fear is unbearable and I’ve read so many medical journals about projections and types but nothing seems to match xx
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    • Posted

      I promise you, you will drive yourself crazy because nothing will match and

      you will be so scared, please don't do it to yourself. We are all individuals no two stories are the same, just keep calm, don't self diagnose on the internet and wait for the facts. The bottom line is all the worrying in the world won't change anything... just take a step at a time with clear facts not internet rubbish you'll see you mind will be a lot calmer . I promise ..,

      Take care xx

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  • Posted

    Hi please try to stay focused on the positives like ca125 being normal I had a 10cm cyst when I went to gynae the news was doom and gloom and was told oncology would look at my ct scan which they did and I was then told that there was nothing sinister however due to my age 54 and heavy bleeding I had hysterectomy the pathology was all clear they always tell you worse case scenario until further tests ca125 being normal is a good sign please try not to worry xx
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    • Posted

      Thank you. I know they had the MDT at the beginning of this week so it’s been really hard not to bother them by calling, but I assume it is positive that they haven’t rang me. It’s really hard to focus on anything other than this and the fear right now xx 
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  • Posted

    I totally agree that it is worrying but no news is good news try and stay positive I drove myself crazy with worry and dont google its always the worse case scenario please let me know how you get on xx
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  • Posted

    hi louise, i really got myself worked up as well reading online... don't go there. You can't self diagnose, it could be anything and is more likely benign anyway, given your age, your ca125 result and as it was checked before. 

    I went for an u/s scan last year and was told I had an ovarian mass, also complex and an enlarged ovary. Once I googled that, it was just basically cancer all over the screen. My GP initially considered it a complex cyst as well and there are certain things they look out for, such as abnormal blood flow and free fluid in the pelvis. 

    I had further tumor markers when I saw my gyn consultant and by the time I went to see her, it had shrunk a little. That was comforting but they couldn't tell exactly what it was. Ended up have laparoscopic surgery in March and it ended up being "just" mild - moderate endometriosis, confirmed by biopsy. My ovary was stuck to my pelvis too. I opted to have it removed. 

    I was convinced that it was something awful or borderline as I had no history of cysts, endo or gyn problems. I honestly think you'll be fine, in any case - even if complex -  it is ALWAYS more likely to be benign rather than malignant. 

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  • Posted

    Hi Louise

    How you doing?

    How have you got in today?

    I've been thinking about you, I hope your ok xx

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    • Posted

      It was all a bit of a nightmare and I’ve been in a state. The MDT have ordered an urgent MRI and I need urgent surgery. The consultant said it is possibly borderline. Not stopped crying and had to go to a friends xx
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