Thymoma diagnosis

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I went to the doctors back in June 2021 with stiffness in my neck and back.I was sent for am mri scan anwas told I have arthritis and also an incidental mass was found in my mediastinum.Further on from that I had a ct scan because it was thought it might be an ectopic thyroid or gastric cancer.

In October 2021 I was finally told not to worry its neither of these thin gs and definitely not cancer,but it would need further looking into.

All went quiet once the consultant said it wasn't cancer,they were all over it when it might be.In january I went back to the doctors complaining of choking now and again when I swallow.

Nothing was said about my chest by the doctor,Then in February I was choking a lot so the doc refers me to eat debt.But I still hadn't seen anyone since October.

I've now had a cardio thoracic surgeon tell me it was thymoma all along.Im waiting for a scan now to see if it's grown since October and for surgery to remove it.It all feels very surreal.I just feel I want to talk to someone who knows,

  • Hi Mags

    It sounds like it's taken a long time to get your diagnosis but hopefully things will start to move quicker now.

    I didn't have this type of cancer but I noticed that your post hadn't had any replies yet. Looking around this group it's, unfortunately, very quiet so I've 'tagged'  into my reply as they were the most recent person to post about being diagnosed with thymoma. Hopefully they'll pop in and tell you about their experiences.

    When you feel ready, it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

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  • Hi

    not sure how to use this platform. After quite a battle with a condescending group of various consultants I managed to get the thymoma removed which I’m delighted with , obviously. The  worrying thing is there is a complete lack of expertise about thymomas within the NHS and you have to fight to get anything done. Though I am relieved the thymoma has been removed I have been left with little trust in the NHS. 
    I am unsure how to reply to Mags but I would advise her to stand her ground, don’t back down to anyone, where necessary lodge a formal complaint ( I had to submit 2 to get the treatment I needed, “they who shout loudest” is a sad but true fact. 
    regards

    Esteban

  • Hi 

    Thanks for taking the time to reply to Mags. She should see this as any replies to her original post will appear for her to read.

    It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    I hope you are doing well.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"