Any help would be appreciated my spelling is terrible too lol 

Hello, I do hope you have had your op and that your recovery is going well. I have only just joined this forum but was found in early December '19 to have an 8cm mass believed to be thymoma (type and stage to be confirmed eventually through surgery). It's in a similar position to your description -  on the left between heart and lung. Surgery will involve removal and replacement of pericardium and possible phrenic nerve sacrifice. Only had CT scan because of severe pain one night in left shoulder blade which then switched to the front of the chest in the form of frightening stabbing pains. The diagnosis process has been a voyage in the dark, at no time offering certainty about the best approach to surgical resection. In early Jan I was told I'd have op in 2 weeks..but didn't see 1st surgeon until end of Jan, who said I'd have an extended sternotomy. Since then a second surgeon end of May and finally a 3rd surgeon now in June have proposed completely different approaches. Op is planned for mid July. From March Covid 19 has been the cause of the delay but before that it was as if the approach wasn't certain enough to proceeed..that is my impression as 2nd surgeon planned a much more radical version of the op, with 2 incisions - front, open chest  and side but the 3rd surgeon is opting for VATS, through side despite the size of the tumour. Says the open chest version of the op is what they USED to do. To access everything they need to remove they collapse the lung. The advantage is a less risky op (but I do worry they may not be able to remove everything needed but am trusting their expertise). I'm posting this just in case it's of use for anyone else as I have found the lack of clarity and information and the discrepancies between different surgeons extremely stressful. I wish everyone affected similarly all the very very best and am happy to 'compare notes' re. experience. Lastly, just to clarify the 3 surgeons were not by choice but just how it happened to evolve.Wishing everyone well, HMJ, Wales, UK 

Have you had any progress since your last post? It seems odd that they were 'waiting and seeing' rather than planning to remove tumour as surgical removal seems to be the main solution for thymoma above all else. It must have been extremely frustrating to have been treated seemingly all too casually. Hoping you have had positive progress since then.

Hello everyone, 

I've just come across this thread & I don't know if I'm relieved I have as I was diagnosed with a Thymoma in April or a little bit upset that I have because well it's a cancer forum ‍♀️ I was already under the care of a neurologist as well as OT, PT and a rheabilitation specialist when the tumour was discovered by an accident (which I understand a lot are) Just over 2 years ago I was diagnosed with a rare auto immune disease in my spine (lumbrosacral plexitis) and had no sensation from the waist down, I spent almost 5 months in hospital recovering and learning to walk again...I've had a couple of relapses but nothing compared to the first time it attacked my body.  In the beginning of March of this year I thought I was taking another pretty bad relapse and finally gave in and phoned my neurologist but as it turns out I also now have multiple sclerosis.  When I was being tested I was sent for a CT scan of my chest, abdomen and pelvis which I thought was pretty strange but as it turns out there was some pretty strange numbers in regards to my bloods and my lumbar puncture and I was phoned in April to be told about the tumour and enlarged thymus gland....everything has been put on hold due to COVID-19 which is understandable but 4 months later I'm no further forward, they want to remove it which I'm already aware of but I honestly can't get answers anywhere and it's so frustrating.  I've recently been tested for myasthenia gravis as well and I'm praying I don't have it as my body has enough to deal with, I'm only 37 and it's honestly been the hardest 2 years ever.  How long have has anyone waited from diagnosis of the tumour to removal? What was recovery like? I have about a million questions but don't know where to start.  Sorry for the long post! 

Hi

I was diagnosed with myasthenia gravis January 2013 I had my thymus removed in July 2014 thats when surgeons discovered a thymoma. I had a month of radio therapy. I was back to work 12 weeks later. I still have to take immuosupressents which controls this condition very well. 

Hi HMJ,

I read your post and felt compelled to reply.  My wife had a thymectomy performed using VATS, it is much less invasive and they removed the tumour this way.  Unfortunately my wife had part of the phrenic nerve removed, as this had been invaded by the tumour, so it has affected her lung function, but she is still here.

I've also read about other instances of surgery where the phrenic nerve has been substitued for another nerve, positioned near a rib, which is then re-deployed to replace the phrenic nerve - thereby reconnecting it to the diaphragm and preserving lung function.

My wife is Belgian and was operated on at a hospital in Belgium.  If you need second opinions don't be afraid to ask.  I've no idea of what the surgery would cost for UK nationals though, but no harm in asking.

Best wishes,

Dave

Hello Alebanna

im delighted to be able to finally reply to your supportive response to me back in 2018 (gosh where has the time gone!). Firstly thank you very much for your help. I reached out to you when I was feeling really low and scared and really didn't know what was going on!  Originally it was blurry vision and a droopy eye that made me seek medical help, first noticed a week before my 30th birthday back in August 2017. This progressed to generalised myasthenia (to the point I couldn't even hold my neck up).
But fast forward to now; im really excited to inform you that I had a thymectomy in October of last year, and my myasthenia symptoms are being well treated with a combination of Prednisolone and mestinon (I'm hopefully starting to taper to see how my body is doing now).

Thank you again for your kind words of encouragement. It really helped me and I'm very grateful.

kind wishes

serena 

Hi I hope you have had this sorted by now . I have just had a Grade B2 Thymoma removed so welcome to the rare cancer club . They attempted to take it from the side as a keyhole procedure but it went wrong and I ended up having my Sternum cut open , my ribs spread , my lung collapsed and losing a litre and a half of blood and having one of my main veins sealed off .

i was told to wait a year ago as it was likely not cancerous and I was one step away from it spreading round my body so don't listen to them it's your body.