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 

  • Not 'urgent urgent' is how my Thoracic surgeon saw it.

    I went for a PET scan/Biopsy in Oxford  -  originally the young A&E consultant had said to me "I dont even know how they would get to it"

    Well, the Biopsy Registrar lady said "we do this type of biopsy every day"!!!!! (in and out of the scanner while they put the needle in a miniscule distance every time) you wont feel a thing.

    Lung Function Test at a later date then Heart test to ensure you are fit and well.

    Operation (VATS) was painless and I woke up talking gibberish a few hours later.

    Never felt any pain after the operation at any time and I was up and about after a couple of days resting at home.

    Hope this helps,

     

    Tim

     

  • Thanks thats helpful to find you felt good after surgery and didnt have much of a recovery.

    I wonder from anyone else on this thread who have had surgery what you recovery time was like please?

    Many thanks

    Sharon

  • Hi [@alebanna]‍ I hope you dont mind me asking how your recovery was after surgery?  i have to get surgery on 29th July to remove thymus also.  I been told will be in hospital for about 3 days and will not be able to drive for 6 weeks & 12 weeks no exercise?  Not sure how long I will need to be off work or any indication at all?  Thanks in advance

  • They moved me out of recovery ward after 3 days (on the 3rd day) and I went home.

    My throat was a bit sore and mild chest pain but nothingh to worry about really (and I have a low pain threshold being a man).

    I was given a bottle of morphine but never used it.. some strong painkillers (which I did use).

    My biggest surprise was when I woke up after surgery and my boobs were big. They use gas to pump up the chest cavity so they can access everything. My scars are now almost invisible (on the side of my chest cavity - one was about 50mm and a few smaller scars - both sides of the chest, but when your arms are down the scars would not be visible anyway.

    After 2 weeks I was quite able to do 'normal' things but I guess it is not a good idea to exert oneself.

    Hoe this helps,

     

    Regards,

     

    Tim

     

     

  • Thanks for all the info, everyone who's shared. I'm seeing my surgeon tomorrow to get a date. How quickly where you offered your op, following consultant appointment? 
    My thymoma was found when I was suddenly hospitalised with acute pneumonia and sepsis in November, but the chest physicians hoped it might just be caused by the infection - it now looks like it was the other way around. It has shrunk from the 45mmx25mm in November, but still very much there. 
    Amazing how the 'symptoms' are easily confused with the severe anxiety of waiting. I've had difficulty swallowing, light headed feeling, exhaustion... my main worry is time off exercise - I'm a long distance runner and it's how I cope with life. Argh. 

  • Hi,

    My consultation was on November 11th and operation was December 15th just before 1st lockdown and hospirtal operations being cancelled - in between had the biopsy and heart and lung test.

    Thymoma is usally found while looking for something else..I consider it a blessing. The first X-ray found a touch of Pneumonia (that what was causing my sharp chest pain). 

    I could write a book about the psychomatic symptoms that I had - every one of them real!!!

    My throat had strange things going on... then I read about Globus and found that it had been diagnosed in patients in ancient Greece.

    Anxiety caused numbness in various body parts, hyper self testing of heart and blood pressure etc

    Flushes of adrenaline then causing heart rate and head spin that then caused adrenaline rush etc etc

    You will learn a lot about the relationship between body and mind

    I struggled with sleep but the 'Calm' App worked for me (as did BBC Podcasts such as 'Soul Music' about the stories behind songs etc).

     

  • Hi Peter - this is a long time ago, but if you're still on this forum would be nice to have an update