KATHIE
I to have had a diagnosis of this rare cancer, but it was found in surgery and I feel that I have not had the information that i should have. Only now almost 2 years after surgery am I being given information that I should have recieved at the time of the operation. I would like to know how many other people have not been informed about the severity of the cancer and the chance of reoccurrence. I have been told that I will be kept under servellaince for the next 5 years but the checks that I am having seem to concentrate on the localized site rather that where it may have developed elsewhere. How many other people have had problems with the cancer metastisizing elsewhere within a 5 yr time frame