I have been a survivor with no recurrence (Sept would have been 5 years). My original site was my neck inbetween my cartiod artery and jugular vein. After many scans etc I remained clean. In March I insisted on chest ct scans (I would request every time and be told it was not necessary),
In March 2012, when they finally did do the chest scan I asked for, (btw they looked up, I had not had a chest scan in 3 years). I was diagnosed with a small form of what they felt was mucuos that they felt I had aspirated into my lung from my swallowing problem. My oncologist sent me to a lung cancer dr. I do go to a University Hospital in Florida.
But I am now seeing all of these great info that was not around when I was first diagnosed. They are talking about taking my lower left lung out and they will move fast. I am scared, I do not know the course of treatment for afterward and I am seeing I may not be in the right place for SPECIALIZATION in synovial sarcoma. I am also not the normal stats for this disease.
I am a woman, was diagnosed at 43. I was asked immediately if I ate red meat, coincidentally I have not eaten red meat since I am 11 years old, than they asked about smokin. Gave up that in 99. They are baffled by my case.
I feel I should look into MD ANDERSON in orlando or Houston? Any suggestions? Anyone have any similar experiences? I am very very scared.
Thank you for listening,