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17 Aug 2014 11:02


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.


Re: Thymoma

17 Aug 2014 12:06 in response to jansam

Welcome to the forum and sorry to hear of your worries.  All sounds a bit strange to me - its a bit like leaving someone with a broken leg cos no one at your surgery knows how to fix it.  Personally - but I am a pushy type  - I would insist that I am referred to a specialist asap, even if it were out of my area. Sadly, I have found that those who make the most noise in situations like this are the ones who are listened to.  You can also ring the nurses here on the site for some guidance.  Please let us know how you get on x

Re: Thymoma

24 Aug 2014 16:18 in response to max56

Thank you. I have aske dto be referred to hospital in London. Following this request I have also been aske dto attend an appointmnet at my local hospital to discuss things further but I have decided I want a second opinion no m,atter what now.

Jan Sam

Re: Thymoma

11 Sep 2014 02:04 in response to jansam

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.

Re: Thymoma

8 Mar 2018 19:57 in response to alebanna

Hello Peter

I wonder if your still on this site I was diagnosed with a stage2bB2 invasive Thymoma back in 2015 it was the size of a iPhone 6 and attached to my right lung. I had it removed and radiotherapy it has been a long recovery however no one seems to know to much about these thymomas they are treated as cancer  but  it’s very grey area I have been in so called remission for the last 2 1/2 years when I ask my oncologist about long term prospects I given the wait and see approach and we will keep monitoring you. Peter have you got any views of this as I am somewhat puddled. I hope you are doing well and looking forward to hearing from you Art52 

Re: Thymoma

8 Mar 2018 23:41 in response to Arth52

Hi Art52

It seems we have been down very similar paths. Since I was given the all clear in sep 2014 I have been making the annual trip to x-ray and oncology. All has been clear. I think anyone who has had a cancer is more likely to get cancer again. I am living a normal life now and I'm not going to worry about what could happen. I am very grateful to the proffesional staff of the NHS who treated me through this tough time. Could I ask what your symptoms were. The reason I ask is mine was a droopy eye which was diagnosed as myasthenia gravis (MG) I was sent to a neurologist who told me with mg its posible i would have an oversized thymus. Xrays had shown it was enlarged. But it wasnt untill they operated they realised it was quite a large size thymoma and attached to my lung and heart sack. I still suffer from MG but controlled by tablets. I am pleased to hear that you are doing good as well. Interested to here what your symptoms were and how you were diagnosed.


Re: Thymoma

10 Mar 2018 15:56 in response to alebanna

Hi Peter 

Good to hear your doing well and thank you for your reply. Like I mentioned Thymoma’s  are a very grey area and I appreciate your feed back. I was diagnosed in May 2015,  now being a gym bunny I always had a sore chest muscles after a training session which did get less after rest. However I started to suffer from shortness of breath and a heavy feeling in my chest the symptoms were like chronic indigestion over time this got worse. I remember I was out the Saturday before diagnosis running round Richmond Park and I couldn’t get my breath the pain was intolerable. My wife wanted to take me to AE but being a bloke and ex serviceman I shrugged it off ( what a clown I was) four days later I fell ilI went to the doctors and then sent to hospital, I had the normal tests and scans which revealed a mass near my right lung and I was told by the register in her opinion (that word you don’t want to ever hear) it could be cancer. How did I take that news well I adopted the let’s wait and see what the PET scan reveals and biopsy. Within weeks I was referred to a surgeon because of the size of my thymoma they didn’t do a biopsy. A date was set and in I went,  my op was done at West Moorlands street hospital in London. I had median sternotomy and excision of the anterior mediastinal mass, in normal speech the cut my chest open and removed a mass. The thymoma was invasive and attached itself to my right lung and other organs it was classed as Stage 2bB2 thymoma. The recovery from surgery was 6 weeks then 30 fractions of radiotherapy which went quite well did suffer from internal scarring and even now a dry cough not to mention tiredness it seems that no week is the same sometimes I have loads of energy then nothing everything is an effort. However 2 and half years on and I think I am doing well I have had to change my way of life as somethings I can’t do there is that concern of cancer returning but life’s for living I do suffer from the odd bit of pain in my op area but I have been assured that it’s nothing to worry about as my scan are ok. I am now on 6 monthly reviews. To be honest this really changed my life I am more laid back and take everyday as it comes. Peter sorry if this has been long winded but your-the only other person I know who has had a thymoma. Can you tell me how you coped with it at the beginning and how it changed things. 

Thankyou I look forward to hearing from you