Dan, I feel your pain and I’m truly sorry that your son is undergoing the emotional trauma of cancer at such a young age. But do not give up hope. Like your son, I had a tumor as a teenager, which multiple doctors told my parents not to have removed due to its location to a nerve. It was in my elbow for 13 years prior to having it removed at age 31. Once removed, they still did not understand it was cancer. (Synovial sarcoma is a rare cancer only 800 to 1000 cases diagnosed a year in the US) After the surgery, my lymph node system had not bounced back and fluid pooled in the space of the tumor. I believed the tumor was back and at that point my surgeon sent the tumor out and it was diagnosed as synovial sarcoma.
To make a long story short, 30 years after those first words were spoken, I’m still here fighting. My treatments included the initial two surgeries, Brachy therapy, radiation, 3 lung surgeries and chemo (which was not effective). I’ve been told that my course of treatment was unusual and that synovial sarcoma’s course of treatment was not typically surgical. Mine just grew in places where it could be removed. I always opted for aggressive treatment and sought second opinions.
I’m currently being treated with Votrient/Pazopanib. An inhibitor that stops the growth of the cancer is 49% of patients. It was approved by the FDA in the beginning of May, the first new drug approved for sarcomas since the 1970’s.
At one point my doctors stopped sending me for chest scans after 10 years of remission and said I was cured. Even when cancer is removed, it can still return and no one can predict its course.
My prayers are with you and your son. Be strong.