Hello you lovely lot ️ just let let you know I have had meeting with my oncologist and he is very happy as all looks very good! CA 125 is still super low and whist I forgot half my questions ( remember to write them down!) will continue to have bloods every 3 months and another scan in 6 but so far so good! Hope you are all doing well xx

Hello everyone! Almost 3 weeks ago I found out I have a 9cm mass after 5 months of intermittent bleeding. I have a CA125 result of 56 and have had my MRI scan. All I know is that the mass is complex. The waiting is so so hard. In a bid to try and make sense of some of the news I've received, I have found this thread. Thank you for sharing your stories. Over 2 years ago and still such a help to people in a similar situation. 

I am shocked by how long it can take from finding the mass to actually getting it surgically removed. But also seeing it is helping to manage my expectations a little bit, that I could be waiting longer than I think. 

Any tips welcome.

Hello everyone! Almost 3 weeks ago I found out I have a 9cm mass after 5 months of intermittent bleeding. I have a CA125 result of 56 and have had my MRI scan. All I know is that the mass is complex. The waiting is so so hard. In a bid to try and make sense of some of the news I've received, I have found this thread. Thank you for sharing your stories. Over 2 years ago and still such a help to people in a similar situation. 

I am shocked by how long it can take from finding the mass to actually getting it surgically removed. But also seeing it is helping to manage my expectations a little bit, that I could be waiting longer than I think. 

Any tips welcome.

Hi Rox, so sorry you're going through this too. I hope so much it's not cancer, but I remember clearly the fear. Be so kind to yourself. Just don't feel bad pushing for results etc. It is such a hard thing to experience. Mine was a scare, but I've witnessed the cancer journey via ex partner and family. Just check in on here when you need to we'll be here x

Thank you so much for replying! So beautiful that you check in on here to continue to support others. Thank you for the empathy and kindness! Will definitely check in again. The wait continues for now x

Hi Rox, even though my own experience and surgery feels like a very long time ago, I remember the overwhelming anxiety and fear of the unknown very well. I wouldn't wish it on anyone and I remember feeling so scared and desperate for some sort of peace of mind, that I decided to offload my concerns on this forum. I can't tell you how much it helped. Lyns21 was one of the first people to reach out and share her own experience and I appreciated it more than she'll ever know. Other people suddenly came on board and between us, we helped each other through and let off steam. The process from beginning to end can take a very long time. I found that once I got my MRI results back, I felt a lot calmer, even though I still had a long way to go before everything was sorted out and I finally got signed off. Keep reminding yourself that you're now on the road to getting this problem dealt with. It's scary waiting for answers, but once you've got them you'll find it much easier to deal with the next few months. X

Hi there! Thanks so much! Honestly just reading that people have also processed this situation with the same fears and concerns I have has made me feel less crazy! So glad that everything went well for you and thank you for being here to offer encouragement years after your own situation. 

Will definitely touch base with updates. Thanks for your time x

Hello everyone! I have a bit of an update. So the last I had heard was that the drs came back saying that my mass was complex after my MRI and that my case required discussion with specialists in an MDM meeting. I got a call today and they are sending me for germ cell bloods which are tumour markers and the meeting is happening on Friday. Has anyone gone through this? Is this normal/routine? As you can imagine, I'm having a major wobble. Any insight would be amazing. 

Hi Rox, sorry you've joined the group! So the MDT (multi disciplinary team) meeting is very normal. It's where everyone e.g. surgeons, radiologists, oncologists, nurses etc meet to discuss cases whether they're diagnosed or not. Blood tests can show things like ca-125 and other numbers for genetics which will help them work out what is going on with you.

The waiting is so very hard but try not to get ahead of yourself too much and focus on the bits you do know. 

It sounds like they're acting in the right way compared to normal so nothing to panic about there, it's just all very scary.

There are lots of cyst types and you can probably see from reading the thread that not many end up being actually cancerous. Mine was, but hopefully Ive taken one for the team and you'll be fine. But if not, you're in very good hands x

Sorry you're going through this. I had raised markers and I had "immature teratoma(?)" All over my paperwork, but it wasn't cancer. I only didn't have a hysterectomy because my surgeon said she'd go back in if it was confirmed by biopsy. I was 38 and not ready to go through menopause so I took the risk. It was just complicated by having dermoids on both ovaries so it looked very suspicious. But so gratefully fortunate that it wasn't cancer! It's possible medicine has moved on a bit, but I think biopsy is the only way to confirm. I've got everything crossed for you and I hope that they're being gentle with you?