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Thymoma

AnonJS
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Hi

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.

Jan 

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    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

  • Offline in reply 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.

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    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.

  • Offline in reply 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 

  • Offline in reply 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.

    Peter 

  • Offline in reply 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 a 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  

  • Offline in reply to Arth52
    Hi Arf I am really glad to hear you're doing well and all your scans are coming back clear which is really really good news, hopefully soon you should be having your scans yearly. You asked me how I coped at the beginning and how things has changed. I had never been seriously ill before I have always work in the same industry. My job kept me physically fit and I never took time off work. So when I was diagnosed with Myasthenia gravis which is a chronic autoimmune neuromuscular disease, that took me by surprise. I went home and had to explain to my wife and daughter that I was very ill and could be on drugs for the rest of my life to slow the progress of the disease. I told them I was recommended to have my thymus removed so to reduce the production of antibodies which could help my myasthenia slow down or even disappear . I think that evening it hit home and tears were shed by all. I remember thinking how am I going to pay the bills how am I going to pay the mortgage I think this was my main concern more than my illness. That was the only time I felt emotional. The next day I had my positive head on knowing that If I have the op this could solve the problem. In the mean time I went back to work I was happy telling everyone That I was kind of looking forward to having my sternum sawn in half and joking with my work mates not to work to hard while I was off for 12 weeks with my feet up. Moving on a Month I had my op all went well as far as I knew. When I was back on my feet about 2 week later I was invited back to the hospital for what I thought was going to be just an after op check up. I was called in to see the surgeon who operated on me. He asked if I had anyone with me who would like to come in as well. I thought to myself Hmmm strange request. I had my mum with me as she had driven so she came in. I was told that when they opened me up they had discovered a thymoma which had started to burst out of the area it was in attaching itself to my lung and heart sack. I understood everything that was explained to me, what it was and what would happen next. I was told I would have to have radiotherapy over a course of 28 days. At this point I felt Nothing, I wasn't sad I was still in a positive frame of mind. I knew I had to be strong to get over what lay ahead. This would be the 2nd time I had to come home from hospital and tell my family the situation. My family and friends were great. I was off work for 16 weeks in total and lucky enough not that I expected my employer paid me full wages all through the time I was sick. This really helped as I didn't have to worry about bills etc. Unfortunately I still have myasthenia gravis but at the  moment is being controlled with tablets. I am back to work still doing the the physical daily routine. I have changed since this experience. I am a lot more chilled than I was. I don't rush for anyone anymore. where as before I used to rush around and was always punctual. I have learned to adapt how I work to make my daily job easier for me. I know my limits. I know when to stop and rest. When I look back I think I can describe the whole thing as an emotional rollercoaster but I am glad there were more ups than downs. Just curious how did you cope with the radiotherapy. ?
    Thanks Peter
  • Offline in reply to Arth52
    Hello! I live in Scotland, am 30 years old and have just been told I have a thymoma. None of the doctors on my island have diagnosed this before and it’s all feeling overwhelming and scary. I have a meeting with the neurologist consultant and my own gp on Tuesday next week. They think I have myasthenia gravis and they found my enlarged thymus gland on a chest ct when checking for any abnormalities. My immediate thought is I want to have my thymus gland removed ASAP. Can I ask where you got surgery done at? Is it as awful as I’m expecting it to be? Any advice greatfully received. Thank you for your time.
  • Offline in reply to seeny29

    Hi Seeny29

    I am sorry to hear about your latest diagnosis. I am sure you have read my experience and if you need any more information about my journey I am happy to help where I can. I am very interested to know if you were generally well before your diagnosis and what were your symptoms that made you seek medical care. I couldnt wait to have my op hoping it would help slow down my  myasthenia My operation was carried out by a hospital in the South West on the NHS. I was in hospital for about 7 days. I was off work for about 12 weeks. I was not aware I had a thymoma until after my operation. It was quite large and was attach to my lung and Heart sack. I had to have radiotherapy daily over a 28 day period. I had no side effects from the radiotherapy. I am glad I had the op quite quick after the diagnosis of myasthenia, had I left it any longer I may not of been here today. I would say the recovery period after the op was quite painless with the help of pain killers. It is quite hard to start with but everyday that went by I felt better. Don't worry to much about the op. If you do have myasthenia panicking and worrying can trigger a myasthenia attack. You must try and stay calm it will help you cope. I am now back to work leading relatively normal life my thymoma has gone and my myasthenia is under control with tablets.
    I wish you all the best please let me know how you get on.

    alebanna

  • Offline in reply to alebanna

    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 

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