hi everyone.I am a recently (relatively new) diagnosed mg patient.
As part of the routine investigations I had a CT scan and an MRI and as expected, my thymus was found to be enlarged (no exact dimensions provided) but the transcervical approach seems to be possible.

However, I do not want to have a surgery unless the enlargement is of a cancerous nature, but it seems that there is no proper way to assess it. Would you be so kind to share with me if there are any known methods used to identifying a tymoma before surgery ,without biopsy if possible?
thank you

NewMG- Having an enlarged thymus, and not knowing whether it is cancerous or not can very scary and doing the transverical approach doesnt seem to me very viable. I know they say that they can get most of it/all of it out whilst not cutting your breastbone open. Yet what if they dont? Theyd have to go back in and get the rest out..what if they left a few pieces in that were cancerous and didnt notice them? Im not trying to be a downer here, yet my doctor went straight for the cracking of the breastbone, and at 17 it was for sure scary, and I didnt want to do it.

Yet, over the process I had 3 CAT scans, and none of them showed a thymoma, yet when the surgeon went in, he was expecting to just see a few pieces of the thymus gland floating around, yet he found a softball sized tumor pressing agaisnt my heart, inside my thymus.

How would a surgeon deal with that if he had gone in transversally?

I know the other way is much more unfeasible for many people as they have to work, yet, it might be worth the downtime after surgery to have the sternotomy done.


And why would you not want to have surgery, unless it is cancerous? This disease can mess with your body much more than just this disease. It can progress greatly, just in a matter of a few days. And having the thymus out, i know its a cure for some, as myself as of yet, but it still is one step closer to helping your body realize whats wrong.

The only way i believe to tell if the thymoma is cancerous is to take a piece of it out to biopsy it, so why wouldnt you just have them take out if possible to check it anyway....

NewMG,

Welcome to the best site for information and support.

Now many here know a lot more than I do so I will share "my" expierience. I was DXed back in 1991 and had no thymoma but my thymus was "spread out" throughout my chest, I had surgery through my neck and chest at the same time so that I had the best chance of removing all of the thymus. I ended up in a drug free remisssion for 17 years, so for me it was well worth it. There was no cancer found. Today my MG is back but no where as bad as it was in 1991 and to have been able to live 17 years MG free, was so worth the pain of the surgery.

It is a very scary event in your life and you must think hard as to what is best for you. I felt I had no choice at the time because I had two children to raise. So what is going on in your life is also a factor in what you decide.

Welcome NewMG:

For what it's worth, here's my recent experience:

Diagnosed with MG in July 09, CT scan showed 4 cm thymoma, so there was no question that I had to have surgery to remove the thymus w/thymoma.

Had my thymectomy (robotically) December 09.

The pathology report described the thymus as 60 gram intact appearing yellow fatty and purple measuring 11 x 7 x 1 cm thick. There is a palpable well-circumscribed ovoid nodule at one edge of the specimen measuring 4.0 x 2.8 x 2.2 cm thick. The thymectomy specimen shows a predominantly encapsulated spindle cell thymoma (Type A).

I'm glad my surgery is over and that my surgeon was able to do it robotically which is minimally invasive. However, I put off the surgery from July when I first learned about the thymoma and I went into a Myasthenic crisis in early December and had to be hospitalized for treatment including plasma exchanges. While I was in the hospital they decided to do the surgery rather than wait til January when it was scheduled.

This site is a wonderful resource of people's experiences with MG, however, everyone is different and responds to meds and treatments differently. That's what is so crazy about this disease. Finding a good neuro who is familiar with MG is also key.

Good luck in your quest for information.

Did any of you have a raised area over your sternum when you were diagnosed with a thyoma or enlarged thymus. I have an area like that and it just feels like a fatty pad and is about 5 inches by 3 inches.

I didn't have this. My thymoma was 4 cm (about golf ball size).

I m not sure I m using corectly the thread, so I do apologise in advance if I m going to post it wrong or if I m not answering all the questions, but next time I should do better.I want to thank you all for your time and I m willing to hear as many stories as possible, it does help me understanding and deciding..

My mg was not diagnosed for almost 10 years, but 2 months ago a doctor in Uk where I leave at the moment managed to establish the diagnosis (I think one of the problem in identifying it was the lack of visible ocular problems in my case). I had treatment with IVG while in hospital. At the moment I m on mestinon, prednisolone and azathioprine....

Due to medication I assume, the condition has improved, I can speak and swallow properly now.

In terms of enlargement, I dont think I have any visible lump, no

The scans can't show exactly the nature of the tissue as it is so small (the surgeon said something about 4 grams regarding my thmus size, which to me seemed extremly small to be extirpated..) They dont want to do a biopsy because the sample they choose might not represent the true situation (eg they cut out a bit that doesnt have cancer whilist the rest of my thymus is cancerous)

so...

you raise valid points thank you, haven t thought about them

The doctor said that he would perform the surgery through the transcervical approach, but he would ask my acceptance beforehand to revert to the full sternoctomy if findings are not good...

you see, when I started the conversation, he said that I have a thymoma (that could be benign or malign), by the end of the conversation he considered the enlargement as a third option, he also mentioned at some point that he thinks I have an encapsulated thymoma and to me there were too many variables into the conversation ( I do understand that is difficult to assess, but maybe a bit more accuracy is possible?) so that s why I am in doubt..

Have you asked to get a copy of the CT scan & MRI reports so that you can read them for yourself. Here in the States we are entitled to get copies of all reports, not sure about UK. Just a thought.

Hi Newmg, If your Dr is willing - I would just want the thymus removed anyway. You never know what may happen later. You may get worse and then find the surgery is harder for you. It may be a hidden cancer as the others have said.

I am reading this thread and am stunned. I HAVE the enlarged thymus but so far it has been IGNORED by 3 DIFFERENT Neuros. I simply do not get it. I have only had the one CT Scan and the GP ordered that one. The Neuros won't even order a repeat scan - perhaps because I do not have severe ocular symptoms and bulbar and respiratory are 'invisible'.

Your Dr sounds good. I would be guided by his ideas.