Thymoma

Hi

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.

Jan 

Parents
  • Welcome to the forum and sorry to hear of your worries.  All sounds a bit strange to me - its a bit like leaving someone with a broken leg cos no one at your surgery knows how to fix it.  Personally - but I am a pushy type  - I would insist that I am referred to a specialist asap, even if it were out of my area. Sadly, I have found that those who make the most noise in situations like this are the ones who are listened to.  You can also ring the nurses here on the site for some guidance.  Please let us know how you get on x

  • Thank you. I have aske dto be referred to hospital in London. Following this request I have also been aske dto attend an appointmnet at my local hospital to discuss things further but I have decided I want a second opinion no m,atter what now.

Reply Children
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