Hi Loulen24,

Welcome to Cancer Chat. I'm sorry to read that you've been through such a difficult time recently and it's not surprising that you're experiencing a wave of different emotions. I'm also sorry you didn't receive a reply any sooner - I see that your appointment was yesterday, so hopefully by now you have found out more about this and any potential next steps to take.

Try to steer clear of Google searching if you can, as this often only increases worry and the information isn't always relevant.

Do use this forum as much as possible for any support if you need it.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hey Loulen24, 

So sorry to hear you're going through this. I'm in the same boat. Totally in the dark about what the complex cyst on my ovary might be and waiting patiently for an urgent gynae appointment. 

How are you doing now? 

x

The wait is unbearable isn't it, sorry to hear you are going through the same. 

I saw the consultant and she started talking about 'chocolate cysts' and 'endometriosis'. We were in total shock as we were expecting bad news. She did say that she couldn't confirm until the mri results were in  though. Drove home in silence and bewilderment as we weren't prepared for that outcome. 

Two days later she called to say mri results were in and I had two cysts, one on each ovary. One was showing complex features that was causing a concern and along with my ca result it would indicate cancer.  She said nothing could be confirmed until it was under a microscope.  I also had a node showing on my lung and she wanted me to have a full chest ct scan. My world fell apart at this point, I was completely devasted.  She said my case would be presented to the MDT team at our local specialist hospital a couple of weeks later, they needed my chest ct scan back so couldn't be any earlier. She put me in touch with specialist nurses, they have been simply amazing and are there for me whenever I am worried or having a wobble. One of them called me half an hour later and went through the findings of my mri, she was able to tell me about the complex features on each one and even talk through what the next steps and surgery would be. They've even gone through the size of each of them, which scared the life out of me to be honest but helps to understand why I am in so much pain. The one good thing I'm clinging onto is that there is no signs of it spreading, even my lymph nodes are clear at the moment. 

The MDT accepted my case last week, they wanted more bloods to check for certain tumour markers to help them try and identify which kinda ovarian cancer I have. I am seeing my specialist consultant this week to hopefully find out more and when surgery will be.  

Everyone keeps telling me it is all suspected and nothing will be confirmed until after my op but I have pretty much resigned myself to the fact I do have it and I have a long road ahead of me.  

I just hope it hasn't spread and something I can recover from. 

I really hope your appointment comes through soon, don't feel embarrassed about chasing, it is your body and you have a right to fight for it. 

The sad thing is that so many of these appointments are not being fulfilled at the moment with people not showing up, They may get a cancellation just before you call.  

Good luck lovely, let me know who you get on xx

So sorry to hear you're going through this. It must be so stressful. The waiting really is awful. 

I know it doesn't mean much when you're waiting in limbo, but try to focus on the fact that they haven't 100% said it is cancer in your case.  It's easier said than done of course! I really hope it turns out not to be. 

And if the worst should occur, they've likely found it early and can treat it. There are lots of things they can do. They're being thorough which is great. No signs of anything spreading is a big positive too. 

As for me, my cyst is small (2cm) but apparently complex (I think it is anyway, my gp just said it looked different to normal cysts and that it qualified as complex so she was fast-tracking me) She told me not to panic and try to stay positive, which for some reason made me feel more scared. My CA125 was normal, but I'm also aware that it can show normal at my age.

I'm flipping between thinking it's no big deal and maybe just a dermoid/ or it looks really really suspicious so they have nothing they can say about it yet until they look more. I keep having highs and lows about the whole situation.

Sorry, I didn't mean to make this reply entirely about me! I really hope your specialist appointment goes well, that the op all goes smoothly, and that you get the very best news x

 

Thank you for your supportive kind words. 
The waiting is definitely the worst. I also found that once I got over the initial shock I actually felt calmer about it. My mind stopped racing as much trying to second guess everything I was asked, every test I had, every look from the radiographers etc. It gave me something to focus on. Whilst the next few months are going to be incredibally hard I feel like I am more prepared than I was before I got told. I do hope that makes sense.

Please don't apologise for talking about your situation, we are all here to help and support each other. It's nice to know I'm not alone in this made crazy world at the moment. 

Fingers crossed for news tomorrow xx