Hi Jansan

I have read your post and I recognise that it has been nearly a month ago that you posted it. Hopefully in this time you have been given more answers to what you need to know. My name is Peter and I was diagnosed with a thymoma stage 3 in the middle of May. between then and know I have had my thymoma removed. If you need to know anything dont hesitate to ask I can tell you what I I know through my experience as patient.

Hi Peter 

I have been diagnosed 3 weeks ago with a Thymoma the size of a very large "mango" . It is lying on the heart , the pulmonary aorta , part of the left lung and the diaphragm nerve running next to the heart. They want to remove it in the next 3-4 weeks. Have you had it removed through the side of through the open chest surgery ? Did they manage to take out everything in your case ? Did you need chemo ? Please can you kindly give me as much information please as your time permits. I don't wish to impose. But any information would be very useful and much appreciated at this very worrying time.  I'm a single mother of 4 and need to now fight to get my health back.  They are saying that if removed entirely , I may not even need chemo . But is the cut on the side giving them enough visibility and access to work at their best to remove everything. I'm wondering if you know from your experience , what's best. Warm regards and many thanks.  Giana 

Hi Giana

Sorry to hear about your diagnosis and wish you a speedy recovery. I went into hospital just to have my thymus removed. I had been diagnosed with myasthenia gravis and by removing the thymus would help my condition. It wasn't  until they opened my chest up to remove the thymus that they dicovered I had a large thymoma which had attached to my heart sack and lung. Surgeons removed most of the thymoma but because it had attached to other organs I was put on radiotherapy over a 28 day period. This didnt start until I had recovered from the operation I think it was 3 or 4 weeks after. When you talk about cutting in through the side I assume your talking about keyhole surgery. My opinion is keyhole surgery is less intrusive and recovery is quicker. I would also think that whatever procedure is offered by your surgeon it will be the right one. Prior to my diagnosis I had always been well and wasn't aware I was so ill but I always remember I said to myself I must be positive and strong, take on and trust everthing my health specialists advise. Because I was cut open by cutting my sternum open my full recovery was 3 months. I went back to work on light duties and normal duties started about a month later. I hope this helps. Dont hesitate to ask anymore questions. Im sure your be in very good hands.

Best wishes 

Peter

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 

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 

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