Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I just found out the path from my thymectomy and I was noted to have a microscopic thymoma. I have done some research to understand this and came across something else interesting.
There are a few members that had MG - got better for like 20ys and then got it again.
I found an article suggesting that it might be possible that if a person has a microscopic thymoma on initial thymectomy that years later they can grow back another thymoma. I don't know if some of these members have had another CT scan to look....but I thought it was interesting and just some food for thought.
http://www.ncbi.nlm.nih.gov/pubmed/20494949
There are a few members that had MG - got better for like 20ys and then got it again.
I found an article suggesting that it might be possible that if a person has a microscopic thymoma on initial thymectomy that years later they can grow back another thymoma. I don't know if some of these members have had another CT scan to look....but I thought it was interesting and just some food for thought.
http://www.ncbi.nlm.nih.gov/pubmed/20494949
J
Welcome to the world of thymoma which is confusing at best.
My understanding is all thymoma have a chance of recurrence which is why the term "benign" is no longer used. Although rare, microscopic thymoma can recur.
Microscopic thymoma is very confusing to me. You might talk with Becca and compare path reports. The way I understand it is there is a new WHO classification--microthymoma. Was a microthymoma found in your path report or nodular hyperplasia (epithelial proliferation) without a macroscopical evident tumor--- which is microscopic thymoma.
The lower the stage, the lower the chance of recurrence. Some with MG due to thymoma due go into MG remission and when MG flares, it is a good indication of thymoma recurrence. Whatever the stage, it is a good idea to have periodic CT scans of the chest to check for recurrence.
Dr. Patrick Loehrer of Indiana University is the guru of thymoma. I understand he takes phone calls, emails and one can send reports to him to be read.
Hoping your MG symptoms retreat now that you are rid of your nasty thymus.
~sherry
The CT showed my thymus to be "moderately enlarged" because this type of thymoma does not form a mass (in our stages anyway... if we had waited longer for the thymectomy who knows right????)
I went to an Oncologist here in Utah in December and he took my case before the board because this type of thymoma is so rare.
With the advice from them I have taken the action to have a repeat CT scan 6 months from the surgery date (which was clear... yeah!) and CT scans looking for thymic tissue yearly after that for the rest of my life to be certain it does not grow back. They gave me high hopes that it would not!
Crazy how excited I am to have a friend here with this type... we will need to bounce more ideas off each other!
Love, Becca