Hi Serena

I am really glad to hear that your op went well and your myasthenia is under control. I wish you all the best for the future.

Peter.

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  

If you need advice or support you could add yourself to www.facebook.com/.../34127563256 Ive had thymoma for 9yrs and still going !!

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

Hi Giana296

Hope you are well now. I am new to this group and just wanted ask some questions as I have the same issue.

Thanks JKP

Hi everyone.

I've been diagnosed with thymic tumour less than 24 hours ago. Was researching symptoms on Google and ended up on this page. While hearing about some of your journeys has been scary, as there seem to be so many unexpected results, it's reassuring to know that most people have managed to get through the process. 

My diagnosis seems to be on the basis of different symptoms than most that have been shared previously. I've had a cough for 6 weeks (plus a cough for 6 months in the summer that was attributed to asthma/hayfever). 3 weeks into the cough, I started coughing up blood in the morning. Also became very very breathless. Doctor started me on antibiotics and steroids. My breathlessness was better but continued coughing blood. Had a chest X-ray done on 2nd jan, was told it was normal, showed an aortic knuckle but nothing to worry about or follow up on. Blood coughing got better a few days after but breathless continued. One day my chest felt heavy, not painful but as though someone was sitting on me. Cardiac tests were fine but when they Did a further chest X-ray, they found it was abnormal. Checked the one done 10 days ago and found that the "aortic knuckle" seen previously was actually a potential mass. 

ive had a chest ct scan which shows it's a thymoma. They can't do a biopsy as it's too deep. They are doing an abdomen and pelvic ct to check if it's spread to other organs. They said that if it's spread (indicating cancer), then surgery will be a few weeks later. If not, if they suspect a benign tumour, then they will wait around 5-6 months to remove it. So far I have spoken to consultants and doctors, but not an oncologist. They said a MDT will decide based on my results and let me know the  treatment plan. 

does that timeframe sound about right to those of you that had surgery?

Hi

i have just found this page. Not sure if I am the same and maybe looking for some help? Last Thursday my GP sent me to hospital as was experiencing pain at my chest bone for a few days and also feeling quite breathless. At first thought might be a blood clot in my lung so sent me for CT contrast. Which found 3.2cm lesion on my thymus gland. I was told I would be refer to resiparory team to be discuss at their MDT meeting. This was done and spoke to one of consultant who advised I am now being referred to cardio thoracic surgeon would will now discuss my case at MDT and send me for a specialist MRI to look at lesion more depth. I haven't been told if it cancerous or not and as you can imgaine my head is all over the place worry of outcome. I was told this was an incidental finding, but still having some pain in my chest which feel goes to my back, today feel like I have really extreme heartburn. Not sure if I am over thinking it all.

just wondering if anyone had same issues as me or help with anymore advice?

thanks in advance 

Hi Nidaa,

I have been looking for this page to help and advise people.

I had chest pains 20 months ago (September 2020) and my GP advised Gaviscon. I had also almost choked on rice dishes twice!!

Bearing in mind I am a 60 year old man with weight issues and high blood pressure he should have advised a visit to the chest clinic.

Eventually I went back to my GP and was rushed to A&E (at the end of October 2020) as they thought I had an embolism (blocked valve).

At the Hospital they gave me an X-ray but that didnt show much but a CT scan later revealed a 43mm tumour nestling between my heart, lung and esophogus..WOW!!

I went back next day to check for further tumours (didnt sleep well)...all clear PHEW!!

The next few days my head went into a spin and looking back anxiety really kicked in. 

2 weeks later I was called into the local Cancer Hospital where a wonderful consultant surgeon and registrar sat me down and said they would remove it using VATS (Video assisted Thoracic surgery)

but the op was to be at the heart unit.

(so what happpens is that my case (or your case) gets discussed at the Monday meeting between various expert teams

I went in on 15th December 2020 as the Lockdown was just gripping the country and many many operations were cancelled (adding to my anxiety).

All went well and the next day the surgeon nonchalently said "all went well, I left no markers and come and see me in 6 weeks" .....I said for further treatment? and he waved and said "if you need it"

My head was spinning and has spun for the past year but if someone had told me that Thymoma are usually not dangerous I wouldnt have needed counselling and medication!!!!

I have been for my 1st annual scan and all is clear.

Thymoma are usually found incidentally.

I had every possible side effect before the operation and now looking back they were all psychological (but real),

I could feel the tumour growing !!!

My throat was swelling!!! (anxiety causing muscle tension)

Shoulder pain!!! (same as above)

You will explore the psychology and see the relationship between the mind and body - fascinating

I am sure you are in good hands and will be ok, but I know exactly what you are going through.

I went for the Jurgen Klopp method...I wanted to arm myself with every tool on the toolbox, so I lost a bit of weight, ate healthily and did everything I could to increase the success rate of the operation.

So good luck and god bless you.

sorry Sharon (not Nidaa)

regards,

Brendan

Thanks Brendan for your reply :).

I went to see the consultant on Thursday (9/6/22) and he is going to remove the Thymus on 29th July - would have been sooner but I have a holiday arranged (since before covid) and he advised I could still go on this as wasnt urgent urgent, if that makes sense?  He is going to send me for another speicalist scan before then as still can advise if this is a thymoma or thymic tumor or even bengin.  But wants to remove.  So I feel abit better I have plan in place and whatever the outcome after surgey I will take things from there, and pray dont need anymore treatment.  So please you scan was clear also.  It is very daunting experience isnt it?  Can I ask after you had surgery did it take long to recovery from this?  I have been told I cant drive for 6 weeks or lift weights for 12 weeks.  I am unsure how much time I will need off work.

Thanks again

Sharon