thymoma or thymus enlargement?
 

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!:hug:
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..

Woah...I just re-read your earlier post and realized that you've had MG for 10-years but weren't diagnosed until a couple of months ago...That's crazy! What were your symptoms during that time?

I've had hand, chest and arm weakness for a number of years before getting my diagnosis too...It wasn't until my speech went down the drain that it could be identified.

With my CT scan, the tumour was identified right away. It was about 5X5X7 cm, and my thymus was hyperplastic as well. The differential was either lymphoma or some other type of tumour, but they were pretty certain it was a thymoma because of the MG.

My tumour was an AB, stage 1. Pretty lucky since I've read that majority of thymomas that start to present with MG tend to be in the second stage by the time the MG shows up, and then require adjuvant radiation. So yeah, there was no question that there was a tumour after my scan.

I have a number of autoantibodies to AchR (for the MG), dsDNA (lupus), thyroid, and prolly other things too (because of the tumour- often, there are antibodies to other parts of the NMJ when there's a tumour). Sorta off-topic, but wanted to include it in case you could use the info.. Are you positive with the blood tests for MG?

The eyebrow thing- I can relate in terms of your description of it seeming like you've had a botox injection. I also haven't had botox, but when I've been extremely weak in the past, it has felt as if my face was paralyzed.

I also wanted to mention that usually I'll have issues with poor eye closure, lip closure. I also couldn't role my lower lip down for the longest time, couldn't fill my cheeks with air, without it all escaping immediately- almost complete facial paralysis-grimacing when actually laughing.

There's a picture I took with a friend just before my surgery, and it looks like I just had plastic surgery. I was so weak that day, I don't even know why I went out. We went to a pow-wow (sp.?), and I got a banick with moose meat- Lord have mercy, it took me an eternity to eat it! lol Note: Don't order game meat when you're having facial paralysis- baaaad idea! lol

Anyway, sorry to have gotten a bit off-topic. I'm not sure what you mean in the last part of your post. Are you referring to the robotic surgery not being covered by NHS?

Ttys!
Nicky

Take what I'm about to say with a grain of salt. I'm no expert, just another MG patient. But I've read a ton on MG and have talked to a lot of others with it.

In my experience, the people with pure bulbar MG, or who have very prominent, mostly bulbar symptoms, who aren't MuSK positive and aren't elderly, have had thymomas. I'm pretty sure that it's because another antibody is at work, one that also tends to be present in elderly folks who develop MG (but don't have a thymoma), but not younger folks who also don't have a thymoma (sorry, kinda confusing).

If you do have a thymoma, I know it seems frightening, but it doesn't have to be as frightening as it seems. Things can fluctuate after the surgery, but not so far from where you are right now, especially since you're already on immunosuppresants. The thymomas are almost always benign.

Based on what I've read about surgery, if you have a thymoma, or it's suspected, I'd just opt for the sternotomy. You want to make sure that it's all out, as they tend to come back if there's any tissue lingering (like any type of cancer).

Rest assured that of all the cancers you can get, as per what my surgeon said, this is the one you'd want if you had a choice. The only trouble the thymoma people with MG have is the MG itself. It's a rough road, but your symptoms are already well-controlled so things should only get better from here, especially after the surgery. In fact, you could get completely better. I have read that that happens.:)

Ttys!
Nicky

Ask for copies of CT scan & MRI
 

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.:Ponder:

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.

Hi Xanadu,

Not to confuse matters more, but I got a bit curious when I read in another thread that you also have Addison's disease and I think hypothyroidism?

I googled addison's disease + hyperplastic thymus, and I found some info. saying that anyone who has an adrenalectomy and many with addison's develop a hyperlastic thymus for some reason. Also, people with Grave's disease (which I know is the opposite of hypothyroidism, but still kinda interesting) also often develop a hyperplastic thymus.

I came across this article re. Graves and the thymus. It's by an MG expert here in Ontario (one that I was raving to you about in another thread).

http://cjns.metapress.com/app/home/c...lts,1:300307,1

Anyway, sometimes, at least with the Grave's, symptoms of it can be almost identical to MG. In the above case, when the patient was treated properly for Grave's, the MG-like symptoms disappeared.

It's all so confusing, though. I wonder why the thymus becomes hyperplastic in these conditions without actually causing MG? It's kinda weird...But maybe that's why your hyperplastic thymus isn't being looked at more closely? Has the doctor ever mentioned that it could be enlarged in Addison's? It still seems like you have MG, though, from everything you describe, and it isn't uncommon to have both- in fact, they seem to be connected.

Hi Nicky, That is what I found when I googled too. No one has actually sat down with me and explained all of this but over time ( and googling ) I have started to work out why there may be a delay for me being dx with MG. I do actually have the Graves antibodies as well as the Hashimotos antibodies ( low and high thyroid) but that can happen with 'simple' Hashimotos as well. And they are not terribly high... And my Addisons appears to be more Pituitary than autoimmune... no AD antibodies ever been found - but that is not conclusive either - as they are fairly transient. I seem to be caught in some type of twilight zone ! :(

please help!asking for thymic carcinoma
 

My mom have cancer (Thymic Carcinoma).diagnosis on 6/15/2011
the Size of tumor:7.2x 5.5cm.

She is 54 years old.Symptoms Findings on 12/2010.continous cough for one and half years.Doctor say this situation cannot take out by surgical.he predict the chemotherapy and radiation treatment will not be good result,So She don't want to cure by chemotherapy and radiation.

I would appreciate on other treatments and experience with this type of cancer naturally. I understand this is a rare type of cancer,
but hopefully can help us become more informed.

Thank very much!
Brian

CT report:

Findings:
Bulky lobulated soft tissue mass over upper mediastinum,showing mild homogeneous enhancement
It measure 7.2 x 5.5cm on largest transaxial plane, and about 6.5cm in height. It lies above
the level of aortic arch immediately posterior to manubrium, which shows some erosion of the
posterior cortex,suggestive of local infiltration.

This upper mediastinal mass encases the brachiocephalic vessels.Bilateral brachiocephalic arteries
remain patent,while bilateral brachiocephalic veins and superior vena cava are occluded.There are
enhanced collateral veins over chest wall and dilated azygous venous system.

There is mass effect with mild compression of the cervical part of trachea.Thyroid gland is unremarkable.

There are multiple enlarged lymph nodes in bilateral supraclavicular fossae,around carina and adjacent to
aortic arch.No enlarged hilar lymph node.Major airways are patent.There is no gross pulmonary mass in both lungs.
No pleural effusion.

Transient arterial triangular enhancement in left lobe of liver,which becomes homogeneous with rest of liver in
portovenous phase,suggestive of shunting.Adrenal glands are not enlarged.

Imprssion:
Bulky upper mediastinal mass obstructing bilateral brachiocephalic veins and SVC,Features are suggestive of lymphoma.
Biopsy helpful to confirm diagnosis.Other differential diagnoses such as thymoma is less likely.

Brian,
Would love to know if you can see the mass on your mother from the outside?

Hi, newmg,
As with our experience with my daughter's MG,seems like there is no certain way to differ Hyperplasia from Thymoma,based on CT results,or....even right away after surgery: the surgeon and chief oncologist were sure (or that's what they said...),my daughter had thymoma, and insisted on the surgery (transternal),she did not have signs of MG at that time,except of constant cough for 2 months,which Drs dismissed as MG simptoms.
I don't want to go to all details,she did start having MG simptoms,she did have surgery,complications, it was long way to recovery ( from surgery), but when, after surgery,I asked the surgeon,during his round visit,what was it in " Pathology report" ,he asked his assistant ,and the assistant read : thymic hyperplasia. I saw him to be REALLY confused,he said : Could not be! I am sure I was removing Thymoma!
....Well,then came another report: thymoma of rare kind,no comparison possible....I do not believe in that ,I do not believe them.
We still don't know,what was it...I just know, IMO,if its possible,go with less invasive
procedure,to avoid complications,as MG is hard thing to deal with anyway.
Best of luck.
Marina.

scared ..... sternotomy on Apr.3rd
 

Hello!! I am new 2 this site and was hoping 2 get any info. on a sternotomy. I am really scared and nervous. I would appreciate any info. on ur experience with this surgery. Hope 2 hear from some one soon!!!


Thank-you!!