Hello Jennifer,

Welcome to Cancer Chat! How did your ultrasound go?

I did a little search for other ladies who have a similar granulosa cell tumor and found these recent contributions by [@madmarilyn]‍  and [@LindaSmurf]‍. I hope they will be along soon to chat to you and share their experiences. I will make sure to drop a line on their thread to make them aware of your post!

Best wishes,

Lucie, Cancer Chat Moderator

Hi Jennifer, 

sorry to hear your recent diagnosis - I know how you feel as I too had a hysterectomy which later proved to be granulosa cell tumour, about this time last year.  You don't say much more - it was a shock for me, as I had just been uncomfortable for a month or so before ending up in Accident & Emergenncy in pain and being sick. The cancer diagnosis as well as the surgery was a major shock and no one had heard of the kind we have, but I was told that the hysterectomy had got rid of the cancer. 

Since then I have done a fair bit of research, as there are various forums where women with GCT across the world have posted. It is rare, and generally slow growing, so that's a positive. statistics suggest recurrence is rare and that if does come back, it may not do so for many years. 

Everyone reacts in different ways, but I found knowing more about it helped me - though I was very choosy about what I read, google is a dangerous thing! 

Im not on Facebook but Inhave read that there's a group called GCT survivor sisters which is very good, and there is a research foundation in New Zealand who have done some  good work. There are some of us in the U.K., and I hope that the more of us there are, the more we can join forces and share our experiences and support each other, you may also want to find other forums, as I have, even reading threads from years ago I found  really helpful. Often those going through it know more than the medical staff! 

there is a lot of publicity around cancer at the moment, high is sometimes hard when you have had a recent diagnosis and can't seem to escape it, and I believe March is ovarian cancer month, but this way, awareness is increasing and more research is being done every day. Do post how your next appointment goes, and I I'll be thinking of you. 

If you have any any questions, try me! Good luck! 

, 

The chemo in 2010 was intravenous infusion, Cysplatin and Bleomyacin, It was intense beause the tumor had ruptured and bled all throughout abdomen and they wanted to attack it before it spread. Hair loss, fatigue, bone and joint aches followed. After that I just had a CT each year to look for tumors. In 2016 when they found 4 tumors (which the radiologist missed in Nov of 2015). Chemo this time was Carboplatin and Paxitaxol. Again, hair loss, all the same symptoms. Then in about May of 2017 my inhibin B & A levels started to rise. I had lower left abdominal pain, so they did an exploratory surgery but found 7 tumors, so they removed those. After recovery they started me on Tamoxifen which I really don't feel side effects except some hot flashes. My Inhibin A & B doubled from Jan to Feb, and I started the Tamox on Feb 1, so I am having the blood tests again tomorrow to see if the Tamox is doing anything. I feel quite good actually. Even went to London and Paris with my son in January after I recovered from Nov and had some good mom son time. He is in the military so we had some time he was available and we just went and had a blast. Wore me out, but good memories.

When I see oncologist tomorrow I am going to ask about other meds that some other ladies are on to see what he thinks we should do. I won't get the lab results for 2 weeks, so I may have to wait and see what that shows. GCT is a recurring little rascal for me, some ladies have longer remissions, some shorter. Hope I didn't ramble too much, but I will let you know what doc says after tomorrow!

Gardening is my therapy, I agree!  Can't wait for it to warm up here!  If they decide for the tamox, I think I had mentioned that the side effects are nil for me.  Feel pretty great.  Just hope it's working!  I'll let you know when I get results.  When do you get next labs and how often?  They have been doing mine monthly because of the increase.