Dear Lea,
I was diagnosed November 03 while going in for a fibroid in my uterus. I had been seeing my GYN for 6 months of bleeding. The doctor performed a hysterectomy but left a ovary in because of my age. (42) When pathology came back with my diagnosis revealing a very high grade as well large tumor. As soon as possible 6 weeks after surgeryI went in again
for exploratory surgery as well removal of the left behind ovary. This cancer like hormones.
All my 9 biopsy's came back fine. I apparently was extremly lucky accordingly to my
oncologist. I am Stage 1 at this time and extremly frightened. There was a sign of vascular intrusion from my tumor on my pathology report. This makes it very hard to relax,I understand what you are going through.
I still have sleepless nights. I have 17 and 15 year old daughters. Not everyone understands what it feels like to live with this. I take medications to keep my nerves calm. I as well feel like I am just waiting for it to come back. I have gone back to work, this helps but I still have my private moments of tears, fears and worries. There is not much information out there on Leiomyosarcoma. If you or anyone knows of any, I sure would love to know where to go.
For now I contiue to keep positive thoughts as you should too. I am sorry you have to face this disease. I am having trouble getting into ACOR's websites mailing lists. I have written them. I think talking with people who are going through the same thing helps. I havent been able to find a group yet.You are all in my prayers.I will have my 1 year in February.
Renee in California