Maureen ,

I had a thymectomy in 2001 and I too was certainly worried in a guy way about my Chest / Pecs and I can tell you I was pleasantly surprised a few months later after my sternum was cracked , I healed quite nicely and 13 years later I still don't mind taking my shirt off at the beach.

Ive heard that there is some really evasive approaches now where the surgeon can remove the gland without cracking the sternum. I understand the cleavage issue and that is a perfectly normal concern in my eyes .

I could , if you'd like give you the name of my surgeon who is affiliated with New York Hospital. I hope I was able to help you..

Lastly , my thymectomy had a very positive effect on my mg , still to this day.

CJ... ha ha.. Seriously, it isn't really a vanity thing with my cleavage, its more a matter of the whole thing being a MUCH bigger deal that way then when they go in the other ways... so i am hopeful to avoid it and the extended recovery time, scars, additional chest tubes if i can... but yea.. .cleavage!! V necks, bathing suits and well a host of other clothing.. shirt off at the beach.. ummm no .. not that... i am just hopeful that my size of thymoma is small enough to fit through the little tube things so i can avoid the whole sternum cracking... im hopeful that it has a positive effect as well....

I completely agree and didn't mean to insinuate anything on the vain side , believe me. I was teased right up until I went under about my own vanity as man at such a young age.

There is no doubt in my mind its more difficult for a woman and I understand that completely .

I do hope you get the results I have and didn't mean to offend you was actually trying to make fun of my own vanity.

not offended even a little tiny bit.... us NYers need to stick together...
my point is... i don't want to be cut in half... yea.. kinda basically thats my issue.... lets see if i can wiggle out of it... somehow... someway...
MM

Agree on sticking together as New Yorkers , we wouldn't have it any other way. Being cut in half , yes I know . I always kept myself in shape and one of my fears was loosing my chest hair and scar lol.

Let me know if your interested in a referral , he and his staff were professional and very caring. Glad you didn't take it personal .. Cj

Hi Maureen,

I also had a thymoma 5 years ago, before I was dx with mg. I live in RI, and got several options from thoracic surgeons, but settled on Dr Mathisen at MGH. There is a webite thymomahope.org that has info on thymomas. Also Thymic.org has a lot of info. What many drs. still don't realize, all thymoma have the potential to be malignant. Most thoracic surgeons believe it is best to do trans sternal procedure. It's extremely important that they get a full view of the area and remove the entire thymoma. There is also a concern for seeding in some of the other less invasive procedures. My incision healed remarkably and is only visible if you really look for it. Since thymomas are rare, get a surgeon who has done many thymectomys and has lots of experience. After surgery they will give you the staging and classificationof your tumor.. Make sure you get a full report to keep. This will determine if you need additional treatment (chemo/ radiation) The surgery itself was not bad at all.
Good luck and feel free to ask me any questions.

Judith

I have a related question in response to Judith's post. How many is a lot of thymectomies? I am concerned about the experience of the surgeon I met with, but is it simply a rare procedure?

Hi Maureen.
In 2011 I had a thymectomy performed roboticly, (DaVinci). Thymoma measured at 4.7cm.
Initially I connected with a surgeon who had experience with trans sternal thymectomy. He and I both had confidence he could do the procedure successfully. Then he said to me, if you were my family member I would recommend you at least look into robotic surgery like they do at one of the major centers and then decide.
At Moffitt Cancer Center I met with Dr. Jacque Pierre Fontaine. Come to find he is a renowned expert in DaVinci and specializes in thoracic procedures.
I went with Dr. Fontaine and the surgery was successful. I since follow up with yearly CT's. So far, so good.

You have lots to weight out. I agree with Judith look for someone with experience. A thoracic oncologist may be a good starting point.
Best of luck. Larissa

Hope thru Faith,

Since thymectomy is not common, look for someone who does at least 5-10 a year. Also, anyone getting a thymectomy for a thymoma, make sure you sign papers to have your tissue donated to a thymoma tissue bank for research.
Judith

I had a VATS thymectomy last month that was successful in removing a 5 cm thymoma.

5 cm... interesting... ok.. I am hopeful that is the way i can go... I know only the surgeon can say and i will be meeting with them soon enough. Thank you everyone for the great info!!!

I was just recently diagnosed with MG which honestly came out of nowhere! I had a very stressful year prior to symptoms starting. I since have been diagnosed with either a thymoma or thymic hyperplasia. They aren't really sure but both the surgeon and the neuro are strongly recommending thymectomy (robotic), preceded by IVIG. My question is: does the IVIG make you sick? Do you have to wait a day in between treatments?

I forgot to mention that I have not been given any treatment to date. The doctor wants to wait until after surgery to prescribe mestinon. So I have just been dealing with and managing through the best I can for the last 6 or 7 weeks.

In 2013, I had a bilateral VATS for thymic hyperplasia (not thymoma though). Mine was 24x6.5x2cm. (Not sure which of those dimensions everyone is referring to when they give the size - that's what is in my pathology report). My surgeon was the head of thoracic surgery at a large teaching hospital. I had two small incisions on one side and three on the other - I think the largest one was around half an inch (used to get the thymic issue out), the others were even smaller (for instruments, video, and drainage tube).

Girl talk - with VATS, they go in via the ribs/under breast tissue, all but one of my scars are basically where an underwire is. The other is a bit higher up on the side of my chest, between the band of the bra and armpit - you can only see the scar if I lift up my arm, and even then, hard to tell what it is. This surgery is definitely v-neck and bathing suit friendly :)

Both the surgeon and my neuro told me that these days, the best approach in MOST cases is to do the (bilateral) VATS. Cracking the sternum makes the surgery much more risky and difficult to recover from (though plenty of people do it). Apparently the thought is that even if a tiny bit of thymus is missed, it is overall safer to go back later and remove it (and do sternotomy then) rather than do the high risk procedure initially. That said, perhaps a thymoma would change this recommendation, since it's a tumor and not just angry thymus tissue. And again, this is just what I was told - I don't claim to be an expert. ;)

JMDAustin - I did a round of IVIG before my thymectomy, though I was started on prednisone and mestinon for several months prior to surgery. My IVIG was done in a week - I think it was four days in a row, except we skipped one day because it was a holiday. Everyone reacts differently to IVIG, so it's hard to say whether it will make you sick. It wouldn't be unusual to have some side effects, but they might be minor (I had headaches). Hoping others can chime in on their experiences (or search the board to find more about what others have said in the past regarding IVIG).

Sorry about your diagnosis. Glad you're getting treatment.