Hey guys!

Hope the holidays were happy and as healthy as possible for everyone!

I have come to the conclusion that MG can be just as aptly nicknamed the "RollerCoaster Disease" in addition to the snowflake nom de plume.....

So what advice can you share: I see have a consult with the thoracic surgeon on Tuesday after seeing the Neuro yesterday: CT scan came back with a 2cm by 2cm mass, mass stranding of soft tissue consistent with hyperplasia.... but the scary part at the bottom of the report: differential includes lymphoma or thymic malignancy .... and the HMO has never been this fast to approve consult or referal for anything (total elapsed time from results sent to Neuro- HIS call to me to come in to see him / to confirmation of referal to surgeon and resulting appointment-6 hours). Neuro and I discussed thymectomy and family hx - gram had breast CA that was dx when axillary lymph node swelled up / mom dx with lung CA when mass found in carina and surrounding nodes on routine chest x-ray required for her job (had to take xrays rather than TB test despite never having had TB...) / little brother (a whole 26 years old) just dx with stage IV Hodgkins after a node on his neck swelled up overnight and almost choked him to death- he's going thru a hellious round of chemo.... Needless to say I'm just a bit worried.... don't know exactly what to expect from the surgery, don't know even what to ask the surgeon.... sitting here sort of in a daze....and it ain't the MG acting up any more than usual (or at least I don't think it is)

So sorry to hear your news. Statistics (good or bad) don't mean squat at this juncture. This is about you.

It will be hard to hang in there until Tuesday..but at least it is on Tuesday that you will have more answers. Small comfort, I know, since it is any waiting that is agonizing.

Some things to investigate / think about before then...
1) type of operation ... there are two methods and pros / cons with each. There are folks on here who have experience with each one and I'll bet they weigh in

2) you (and your surgeon) should probably discuss a few days of IVIG therapy for you before surgery. You will want to be as strong as possible.

While your family history is concerning and can not be discounted, try not to get too many steps ahead. First things first....meet the surgeon.

Talk to you soon

Even IF you don't end up with cancer, AND, I'm sure praying you don't, immunesuppressants, especially Cellcept and Imuran, are prone to increase your risks of cancer (especially lymphoma and skin cancer), you also need to remind your doc(s) of your brother, grandmother, and mother's conditions.

Neuros, generally speaking, don't know a whole lot about cancer risks. You will have to be your own advocate. I cannot take immunesuppressants because of cancers in my family. Fortunately, MY neuros haven't "fought" with me over this -- but, I do know of OTHER MGers who have been give immunesuppressants IN SPITE of obvious risks. SO, be your OWN advocate -- stand up for yourself!

Sending prayers and BIG (((HUGS)) your way!!

I'm really sorry you are facing all of this. Jana's right about having a history of cancer in the family and then adding immunosuppressants to that. Bad idea. Though some people have to take that risk. I hope everything works out okay.

Annie

Thanks all for the advice: I did sit and talk to the surgeon for almost 2 hours: he is advising a full sternal approach and radical thymectomy as the thing is huge.... and as he put it he doesn't want to have to go back in because he didn't get it all the first time....not good for me, not good for him....

We also discussed drugs as I do not react well to any narcotic (even before dx / knew I had MG)... he warned me upfront I'm probably gonna be in more pain than his usual patient as there are so many options he can't use either because of my reactions or the MG.... IV tylenol and toradol?- haven't heard of either....

I've been relatively stable on 60mg Mestinon q4 (just don't be late with it...) so he and the neuro want to reserve plasmapheresis / IVg as a big gun if I need it after surgery and will put in a line then to do it if needed - and the insurance company can't argue necessity at that point either....

One more complication to add to the mix:- after the surgeon looked over my history he told me "you are very inflammatory/hyper-reactive - i.e. you don't react well to much of anything that isn't you - which includes the vicrol they typically use for stitches - the last stitches i had to get for an ulnar nerve transposition - my body ejected them whole in blistery white bubbles.... not fun.... So he's got to find something as minimally reactive as possible and will be using staples outside......

The other interesting note: he's not going to wire me - because my job requires lifting he prefers to plate the sternum for more stability and feels it heals better... but I forgot to ask if that means I'm going to set of the metal detectors at the airport now

I so admire your sense of humor!! You have been through a lot - - and I hate that you have to now go through this. But - at least you seem to have 'heads-up' docs - and maybe you will have a chance at remission once the thymus is gone.

As far as airports...yup, you probably will have to allow some extra time!