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...

Welcome newmg,

I had a thymoma, so I had to have the surgery, but even WITH the thymoma, there were times when I found myself searching the net to see if there was some way to make a thymoma go away on its own (I know, silly thinking).

It's not so much that I was scared to have the surgery (I was scared, but not petrified, not-going-to-do-it scared), it was more that I was scared to have a piece of my body removed.

I feel that all of our organs serve a purpose, otherwise they wouldn't be there. Even in adulthood, a thymectomy is considered a form of immunosuppression, so the thymus must continue to serve some purpose...

It's interesting that you have mostly bulbar symptoms with no ocular symptoms. I have the same type of MG- no ocular symptoms (except in sunlight-DV and can't keep my eyelids up for a while after being out in the sun).

I'm happy to hear that your symptoms are under control. I'm taking prednisone too with mestinon, and my doc. wants me to start Imuran. I still have a lot of symptoms, so I feel hopeful about the Imuran working. What dosage of prednisone and Imuran do you take, if you don't mind me asking?

Keeping all that in mind, in terms of remission, it seems that those people with enlarged thymuses (hyperplastic) seem to be the ones who are most likely to get remissions- just from all of the things I've read, so it seems that you've got a good chance. On the other hand, you never know, as with Tyson, that there isn't a tumour hiding there as well.

I think that with all the things I know now, I might go ahead with the surgery if I were in your shoes. Also from everything I've read, the safest bet, in terms of getting all the thymus tissue out, is to do a sternotomy. But that robotic method does seem to be getting better and better.

I know that all of this is scary. Good luck with everything!
Nicky

thank you Nicky

i do completly understand what you are saying in terms of surgery because that is exactly how I feel..and i wonder if people who have the thymus out are at risk of other immunity related disorders at later points in their lives..sorry for bringing up these subjects ...

i m on 90mg mestinon, 30 mg prednisolone(after being on 50 at peaks times) and 100 mg azathioprine.

in terms of light yes i guess you are right.. in my case as well, I have troubles keeping my eyes open for too long in sunlight..

i think i might have a strange thing coming through (maybe is the first stage in the eyedrop lid problem) Above my eyebrow i have an area that seems paralised compared to the other part of my forhead (its not conspicous I dare to say) but it feels like I had a Bottox injection , not that I would know the feeling)

but coming back to the thymoma sbj, was it difficult for the doctors to identify the thymoma? was it any doubt about it? did they know straight away?

I read about Imuran as being superior in terms of side effects, so fingers crossed it will give better results

here in Uk I hear is not yet subsidised or accepted by NHS, I hope I m not wrong , but my neuro didnt know about it?!

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..