Hi FMSG

Sorry to here about your Dads Diagnosis. You may of read my post of my experiences of being diagnosed with myasthenia gravis in Dec 2013 age 48. Just with the diognosis of MG I was advised to have my thymus removed as a precautionary measure to help slow down the production of antibodies. I went with this. I must say its best descission I made. Its wasn't until they operated they found a thymoma stage 2/3. It had started to latch on to my heart sack and lung. After recovery of the op I had radiotherapy for 30 days. This is the brief of my experience. I dont know all of your dads circumstances and Im not a doctor. I do think doctors (neurologist's) and all staff in the hospital I was at are fantastic. I would imagine any decision that your Dads medical team makes is in the interest of your Dads health and nothing less. I do wish him a speedy recovery and he is so lucky to have a caring family to help him through this time. 

Take care all

Alebanna

Hello Alebanna,

Thanks for your reply. Glad to hear you are doing better. Yes we have a neurologist/neuromuscular doctor who has been great but the sudden pericardium effusion meant an (almost) emergency procedure to remove about 1L of fluid from around the pericardium sac. Procedure went ok and now just draining remnant fluids.

Was your thymoma dangerous to remove since it was large and latching on/near heart sac and lung? Did the doctors recommend radiotherapy alone or only combined with surgery? 

Take care too and all the best.

Hi

The surgeons were shocked to see the thymoma there when they opened me up. It was attached to the heart sack and lung. They removed as much as possible. Then i had to wait I think a couple of weeks or so and had to go onto radiotherapy to kill any cancer cells that may have been left behind. I did not have keyhole. I was opened up. All operations is a risk. Removing the tumor and radiotherapy is not guaranteed. So far I have been ok. I still have myasthenia gravis but controlled with methotrexate I lead a normal life but you have to know your limits on what you can and cannot do.

Best wishes

Alebanna

Hi Peter 

its ARTH52 sorry I haven't replied for awhile I've just been refreshing some posts and I came across yours. In your post you said you where diagnosed with myasthenia Gravis as you know I had a thymona back in 2015 and resection plus radiotherapy. Years after I was always feeling tired and some days totally exhausted anyway in July 2019 I collapsed from a severe choking episode and was rushed in the royal Surrey. After numerous amount of blood taking and prodding from specialist over a period of 1 week in hospital they came to the conclusion that they suspected that I had myasthenia. Two months later I saw a neurologist who told me that I had myasthenia Gravis and would need smarties for the rest of my life as there was no cure. He explained that I probably had this along time due to the fact I was always exhausted and lacking at times coordination in my arms and when out walking or running it was like wading through thick treacle. I just thought I was getting old! Anyway since that day back in late November 2019 I was recalled back to hospital after more bloods apparently my neoplastic antibodies where showing signs of suspected lung cancer due to myasthenia. What a Christmas present anyway talked about being slapped in the face with that news I remember my thymona had attached itself to my right lung as it was the size of an iPhone 6 bearing in mind that the thymus gland is the size of a grape? Which they cut out but couldn't get it all as it had invade other organs hence the cancer treatment of radiotherapy. 
Anyway more examinations and scans the results no lung cancer talk about totally confused and worried sh**less. Apparently the result was that I had lambert Eaton myasthenia syndrome the daddy of all myasthenia not one you really want but it's associated with small cell lung carcinoma. I was reassured by my oncologist that if I had had this aggressive form of cancer I wouldn't be here today. Anyway you can have LEMs without the other since then I've had four monthly scans and each scan has come back as baseline clear with no reoccurrence which is good news my blood however say something completely different! Still confused! Anyway the reason I've sent this is because having myasthenia is just like having a thymona it can be very lonely. However there is help out there with a self help groups such as Myaware who have been absolutely fab apparently there are quite a few of us. So Pete give them a bell unless you're already a member. Been a bit long winded but that's  my story,I'm taking early retirement this September and moving to dorset by the sea my LEMs is under control with medication to a point but life's  for living especially after the last year of lockdown. Some people definitely showed their true colours to the point of being totally selfish some of us don't get the choice. That's me rant over