Giant complex cyst removed, anxiously waiting for results

FormerMember
FormerMember
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Hello, 

I had emergency surgery to remove a giant ovarian cyst (20cm) on Friday. This all happened out of the blue, I've been having worsening symptoms for 4 weeks now and the pain became excruciating (turned out my ovary was being twisted) before I finally got seen by a doctor and was sent straight up to hospital. The surgery went well, they removed the cyst, an ovary, fallopian tube and my appendix. They have warned me that there is a chance it could be a borderline tumour or cancer. My CA125 was 194 when they checked and they said the cyst looks 'irregular'. It also seems like it has grown very fast. I'm just waiting for the results from the lab which I should get next week hopefully. Just wondering if anyone has any similar experiences to share? Has anyone had a complex cyst plus raised CA125 and it's turned out to not be cancer? I'm only 27 so I know my risk of ovarian cancer is small but they were really stressing their concerns about the nature of the cyst to me in hospital which is making me very anxious. 

Also, my mum (64) was diagnosed with aggressive terminal brain cancer a mere 7 weeks ago which is inoperable and untreatable. I feel like I've got de ja vu and history is repeating itself. I am unable to continue my care duties for my mum as I'm not allowed to lift her which is filling me with guilt and a sense of helplessness. 

I almost feel like I'm in a bit of limbo right now, not knowing exactly what the thing they have removed is. I want to know the results but equally I'm scared this will be opening yet another difficult and devastating chapter of my life. I can't believe how much bad luck I've had over the last couple of months. It's overwhelming. 

  • Hi  and welcome to the online community

    I hope you're recovering from your recent surgery and not feeling too uncomfortable.

    I don't have any experience with ovarian cysts to share but noticed that your post hadn't had any responses yet. By replying to you it will bump it back to the top of the first page where it'll be more easily seen.

    While you're waiting for responses, if you type 'cyst' into the search bar in this group you'll find a number of previous posts which mention them. You could have a look through and reply to any of the more recent ones if you wanted to ask the poster anything.

    I can understand how worried you must be waiting for results especially as you mum has recently been diagnosed with a brain tumour. I'd normally recommend things like meeting up with friends for lunch or a coffee to take your mind off the 'what ifs' while you're waiting for results but social distancing means this isn't possible at the moment. However, you could still have a coffee while talking to them over Skype, etc.

    You might find it helps to read this about how to ease worry when waiting for medical results. Alternatively the NHS has a selection of mindfulness apps you can download, some of which are free, if you fancy trying that.

    Do come back and let us know your results. I'll be keeping my fingers firmly crossed Fingers crossed

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember

    Hello Orchid,

    im so sorry you are goi g through this and all on top of your poor mums diagnosis.

    i just wanted to offer some hope I too had a giant mass removed in February and was told possibly borderline/cancerous I was very lucky and it came back as a serous cystadenoma.  My ca-125 wasn’t raised but I do know this can be raised due to inflammation.

    Try to stay positive if you can.  

    I hope your mum is comfortable I lost my dad 13yrs ago to cancer so know how your heart will be breaking right now.

    will keep everything crossed for you x 

  • FormerMember
    FormerMember in reply to latchbrook

    Hi latchbrook, 

    Thanks for getting back to me. I've had a little look on the forums, I guess the thing is no matter how much reading I do, at the end of the day I just need to wait for the results. It's hard not to go down the Google route - I keep looking up stuff which is definitely increasing my anxiety. It's also easy to read a lot into what the doctors have said - I can't tell if their concerns mean it's likely to be cancerous or if they are just preparing me for the worst. I've got a great support network of friends and they have brilliant. Thanks for sharing those links

    Hopefully I'll be posting good news soon enough.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Emmat,

    Thanks for replying. That is very reassuring to hear, thank you for sharing. Doing my best to keep positive but it's hard, especially when my family have been through so much lately. It's so unfair. I'm sorry to hear about your dad. 

    Thank you, fingers crossed I'll be posting good news on here in the not too distant future! 

  • Hi

    I know how hard it is not to Google things as we all do it. The irony is though, that we go on Google looking for reassurance that what we have isn't cancer but come away convinced more than ever that what we have is cancer. I think even if all you had was an ingrowing toenail, Dr Google would tell you that you have cancer!

    Instead of googling make the most of this lovely weather. Sitting in the shade with a coffee and a magazine is much more relaxing than sitting inside endlessly searching the internet for an answer which you won't find.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to latchbrook

    Never a truer word spoken. Me and my mum are sitting out enjoying the sun as I speak and I do feel so much better for it! Thanks so much for your reassuring words xx

  • FormerMember
    FormerMember in reply to latchbrook

    The results from the lab are back and they have confirmed that the cyst is a Borderline ovarian tumour which is good news. However, they are concerned there may be some in my bowel so I've been referred for an urgent colonoscopy. I can still feel a lump in my abdomen and still suffering waves of spasmy pain. So not quite out the woods yet. Just wish it was all over. Really hope I don't have to get another op. 

  • That's good news that it's a borderline ovarian tumour  but I'm sorry to hear that you've got to have further tests. I guess you'll have to keep the Prosecco on ice for the time being Disappointed

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to latchbrook

    Yep, bit too early for celebrations yet I think. Just keeping everything crossed that whatever else might be in there can be easily fixed! 

  • FormerMember
    FormerMember in reply to FormerMember

    Fingers crossed the colonoscopy is clear.