I am new to this site. I have been diagnosd with a rare tumour called a Thymoma and I wondered if any one out there has come across this disease. I understand now that it is a tumour on the Thymus and about 1 in a million people get it. Mine seems to be at a early stage but that is what I have been told frrom a PET/CT scan. They are usually slow growing and the hospital want to take a 'watch and wait' approve but all I have read on the internet says best long term survival and no recurranse is full resection of the thymus by surgery. I have had no biopsy to confirm it is not malignant. Also what I have found worrying I have only spoken to doctor and nurse rather then a consultant who both have said they have no knowledge of Thymoma, they are work with lung cancer. They say it was what was decided by MDT but they can't tell me their expertise on this type of tumour.
Any help or thought would be appreciated.