Hello TxMommieof3, I noticed you'd not received a reply from our members yet so I wanted to stop by first of all to welcome you to the forum.

I'm sorry to hear about your recent diagnosis but I'm glad you found Cancer Chat; hopefully we'll be able to connect you with others who are going through similar experiences. 

I had a quick look around the forum and found this conversation: Granulosa cell tumour - where [@madmarilyn]‍and [@LindaSmurf]‍were recently discussing various support pages and groups for GCT. I hope that you find it helpful - please do feel free to join in the conversation if it's of interest. 

We also have several members on here who have metastatic cancer and who will no-doubt empathise entirely with what you're going though. It's very much worth having a read of other people's posts and sharing experiences on their threads, if you feel able to.

I hope you find some good support here, TxMommieof3.

Wishing you all the best,

Helen
Cancer Chat moderator

Hi TxMommieof3, so sorry I missed your post in May! I too have GCT. I was first diagnosed last year, after ending up in A&E with unbearable pain and massive bloating. (Your ER??) They gave me an unplanned hysterectomy as the cyst ruptured as they tried a biopsy, suspected OC & diagnosed GCT a couple of weeks later, & suggested it was v unlikely to recur and was very slow growing. I went on with life feeling v lucky, til a monitoring blood test later in the year showed a rise in Inhibin which showed it was back - if it ever went away. ( I found this recurrence harder than the first diagnosis, after feeling I'd had a lucky escape.) After a few scans they operated laparoscopically early this year & found more than they expected: spots on omentum, vagina, all over bladder, on outside of sigmoid colon, and did their best to remove it all, whilst warning me that they couldn't remove all microscopic cells and it would be likely to come back again. 

 My consultant at my regional hospital appeared defeated by events & after a slight delay, referred me to a London specialist. I had thought surgery was the way to beat this disease, but now see it very much depends what it lands on as to how easy that is. I wasn't given chemo after the hysterectomy, but my new specialist offered me 1) watch & wait (not my style!) 2) chemo (I wasn't sure how effective that would be) and 3) hormone therapy (Anastrozole/Arimidex) which I chose. I'm about to go back to my specialist lthis week to see how 3 months on theses drugs might work. 

I have realised that this rare form does its own thing, that stats are old and predicted timescales mean nothing as everyone has their own individual reaction to cancer. There are so many women out there defying doctors' odds, doing their best to enjoy life, I am trying to stick my fingers in my ears and pretend it's not happening. I would suggest a second opinion, as there are also many others on forums who have been given life expectancies they continue to defy. I hope you can control your pain, and would suggest you do things you enjoy, seeing friends, listening to the birds sing/your favourite music, watching good TV and exercising if you can. I find a good walk makes me really appreciate the small things! 

What advice/comment did they make when they diagnosed GCT? At what point did they tell you that's what it was? Did they have any comments about treatments then? 

I do hope you find hope and encouragement, as we women have a habit if proving doctors wrong, but need to be better at questioning the experts! Do ask for a second opinion, and keep hoping! Please let me know how you go. Keep your fingers crossed for me this week too!