Sorry for being so long winded in my first 2 posts and thank you all for your most helpful ones. I learned a lot by reading through so many. I found a website which describes my exact feelings on diagnosis. The feeling of isolation when it dawns on you that not alone have you never heard of this disease yourself nobody you know has ever heard of it either. Being told to just think of it as OC as it has the same symptoms and treatment even though it is rare and as far as I am aware attacks the body in a different way. I never wanted this disease but call it what it is. Having said that the Ovarian community have been so welcoming that I feel less isolated.
I would really like to know how often after treatment following remission are women advised to get the CA125. I would be grateful for any replies on this. Thank you all again and have a great weekend