Hello, new here

After reading some of your really helpful questions and answers I wanted to say hello.

I'm 39 and at the early stages of this journey and it's fair to say I'm pretty terrified. Have a 10cm complex cyst and a CA125 level of 1700. Gynae has told me I'm high risk for OC. Now just waiting for news of next steps which I'm assuming will be removal of the cyst and much beside. Actually feel well, almost no symptoms so it's hard to believe this has all happened in the space of a few weeks. Am trying to stay positive but know it's just a question of how far gone this all is. Thanks for listening.

13 Replies

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  • Hi. Welcome. I had a similar scenario (I've just turned 47) and felt absolutely fine before the cyst was discovered. Feeling a bit grot at the mo as in the middle of chemo. As I said to my hubby, it's ironic I felt fine until they started treating me! Mind you I'd prefer to be getting this thing dealt with rather than living in ignorance whilst it secretly develops.

    I wish you well. This is a great place to find out about the practicalities of what is happening to you and understand treatment and jargon.

    Don't panic until you get a diagnosis though - you may be lucky! Fingers crossed for you.

    Em

    X

  • Hey Jen!

    Welcome to the forum hopefully you won't need us for long but we are here for the long haul if you do!

    I too had a complex cyst it was 16cm so big enough! I was 45 when diagnosed! Had it removed and there were cancer cells in it! I never had elevated CA125 it was 26 on diagnosis so well within normal range so it wasn't an indicator for me! I had second surgery full hysterectomy and removal of other ovary, tubes and omentum! Mine was high grade so had chemo too! Finished that end March 2016 so am one year out from Chemo now and all is great thankfully! More often than not cysts are benign so fingers crossed yours is too but even if it isn't they will put a plan in place and get you to the other side! The part if the process you are currently in in very stressful and probably the worst part from a psychological perspective! Hang in there and keep in touch with the forum it truly is a life saver when you are facing this particular journey!

    All the very best and everything crossed for a straightforward cyst!

    Take Care!

    Dx

  • Hi Jen,

    I'm also 39, was diagnosed stage 3 ovarian cancer in March 2016, so not quite the same scenario, but I can totally relate to how scared you are feeling.

    I hope that, once you have a clearer plan about what comes next, you'll feel calmer. We're a very supportive group here, and we 'get' what everyone is going through 😊

    Yosh x

  • Hi, just wanted to say hello. It sounds like I'm in a similar position to you right now, so just extending a friendly hand of support. Had gynae (mainly endometriosis) issues for a while and previously had right ovary removed two years ago with a large dermoid attached, but now I have a 7.5cm mass on my left ovary and a ca125 of 463. GP made urgent referral, I saw gynae oncology on the 7th April and had a 'staging ct scan' on the 14th. My results are being discussed at an MDT meeting tomorrow afternoon apparently. I have spent the last few weeks literally sick with worry, the waiting for information is very very hard - hasn't helped that bank holiday Monday meant MDT review of information was delayed a week. So.... You have my empathy. I read yesterday that "worrying just makes you suffer twice". It's very true, but I don't know how you can avoid it! Just wanted to say you're not alone. Best wishes, and message me direct if you like x

  • I'm awaiting my CT scan but understand the MDT will consider my case this Wednesday. Good luck and fingers crossed for yours.

  • Thank you and you for yours x

  • How are you getting on Jen, do you have a surgery date yet? Xxx

  • Thanks for getting in touch. Surgery on 30th May. Despite my high CA125 number they want to try to save my other ovary and womb for now which gives me hope. It's all pending CT scan results and of course what they see when they get in there! But gives me something to feel positive about.

  • What about you? Any news?

  • Glad you've got a surgery date, and their desire to save ovary and uterus sounds very positive to me. After my ct scan was discussed at MDT I was told they wanted me to have an additional MRI scan. I had this on Friday, and I have consultant meeting this Friday, so hopefully I'm getting near some answers and a plan now! Waiting has been horrendous and I've not coped too well with that to be honest! Not long now to wait! X. Keep well x

  • Best of luck with the consultant on Friday xx

  • I hope your results are good. Waiting is the worst for me. I feel much better when I know the way forward. It is all very scary and I hope you have someone to give you hugs and hold your hand.

  • Do have a look at the Guide For Younger Women- there is a link on this page and it's available as a download or booklet from the four charities ; Target Ovarian Cancer, Ovacome, Ask Eve & Ovarian cancer Action who with many women already diagnosed produced it a couple of years ago.

    I also think the Target guide, 'What Happens next?' is an excellent booklet for everyone newly diagnosed...

    Wishing you hope & strength xx

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