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 

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 Alebanna,

I was diagnosed initially with possible lymphoma as I had a swollen lymph node under my jaw and a mediastinal mass discovered after a PET scan. It all started in May this year, I had two biopsies, an MRI and two scans for the lump and they couldn't get a definitive diagnosis until I had it removed with surgery, in the end it turned out to be a pseudo tumour, a benign growth. I was so relieved and didn't thought too much about the 3cm mass sitting on my Thymus until I had an appointment with a thoracic surgeon who believed was a Thymoma. He said at the time that I shouldn't worry as I would likely forget about it once it is removed. I had surgery again by VATS to remove mass, the operation at the time was deemed successful as they had removed all together with the surrounding fat. Strangely I did not meet my surgeon again, not after the surgery or four weeks later as a follow up to hear my results. A junior surgeon met with me to discuss the histology results and confirmed that I had a Thymoma B1 type, a low grade cancer. He said that I was being referred to an oncologist for Chemo (?) and was being discharged. I was very surprised as I was told after the operation that it was removed successfully, I was very confused and had no insight at all of my situation. The next day I made an appointment to meet with an oncologist privately, I had arranged to have my report sent to him prior to meeting and confirmed that my stage was 2b because of positive posterior margin and advised 25 sessions of radiotherapy with VMAT. I am still to start treatment this week and scared of the side effects. Reading about Thymoma I get conflicting information, some will advocate this pathology as being almost benign with a very good prognosis but you go to support groups and finds that people actually die of the disease.I would welcome any personal experience as I am completely lost, I cry every night and feels that I can non longer cope.

Jacqueline  

Hi was reading your post from 2020, I wondered how you got on x