Hello. I am new to the group, as far as a member, but I have been following the discussions for some time. I was diagnosed with synovial sarcoma in my thigh in June of 2014, after 4 months of a misdiagnosis (that's a long story!). I went through AIM chemo from July-August of that year, with surgery in October. The tumor had invaded my femoral vein and I have a very wide excision, but my leg was spared.The tumor was completely viable--so chemo did not have any impact. I have some limitations with that leg, but it is manageable. I had been scanned every 3 months, and on my 6 month (post op) scans, a few new nodules were found in both lungs. My oncologist at that time felt the only option for me would be clinical trials, and encouraged me to look for a larger sarcoma center (I had previously done that when I was first diagnosed). So off I went and found an wonderful oncologist at another facility, where there is a large volume of sarcoma patients. She advised me to wait and see and I was monitored every 2 months with scans. This went on for 6 months, meanwhile, the nodules would grow fairly slowly, but then there would be more. By November of 2015, the thoracic surgeon reviewed my scans and advised to try another round of chemo ( Gemcitabine and docetaxel) and review the scans after 6 rounds. After the chemo, the nodules continued to grow and multiply. At that point (in March of this year), it appeared that there were 7-8 nodules in the left lung and 5-6 in the right. Surgery was done to remove the nodules, and he removed 15 nodules out of my left lung (all viable synovial sarcomas) and 13 out of my right lung.
The dilemma now is whether or not to start a growth inhibitor such as Votrient. My onocologist was very discouraged that I had so many tumors and that they were all positive. She felt that they will come back in a matter of months. Her group felt that because I am considered to be "no evidence of disease," that putting me on Votrient is not recommended at this time. So I'm supposed to wait unitl they come back so I can have measurable disease? I dont' want to do that! I felt that I've been "waiting" all along with negative outcomes! It seems that if they come back while I am on Votrient, then we'll know it's not working! I also asked if surgery would be performed again if they come back, and her response was no, that an embolization/ablation would be performed.
Just looking to see what others have encountered of have any experience with this. I am being treated at a well respected Sarcoma Center in NYC. Thank you