Exactly 1 month ago on May 16 I had a 6 and a half hour surgery to remove a 4.5 cm tumor removed from my right ankle and extend my achilles tendon. They went into the surgery thinking it was benign, hoping to remove the whole mass, but it was so tangled in there, it was literally latched to my nerves and joints/muscles. Basically, all they could do was a large biopsy and a little loosening of my achilles tendon (I couldn't bend my ankle to a 90 degree angle for almost 2 years, so that's why). After it was sent to a pathologist, they found out it was agressive synovial sarcoma. It couldn't be removed with negative margins because my nerves would've been damaged. A couple of weeks later we found 4 small tumors in my lungs, the biggest being 4mm. After trying to find more information on this website, I just got more confused. For my ankle, my options are radiation (rad), or a below-knee amputation. After speaking to the radiation team at Sick Kids where I am treated, I don't feel like rad is worth it. But, I'm not sure. If anyone has any experience with rad near the joints, please tell me your experience. Did it cause a lot of stiffness? Was the joint functional after? Also, I was told that it kills the cells that rebuild your bones. Which basically means, since the foot/ankle area is constantly under pressure, it will eventually fracture. Was anybody else told this? If I go with amputation, I will have a fully functioning leg, but of course, a quarter of it will be fake. It will be a below knee amputation. This will guarantee the tumor won't recur locally, but do I have any other effective options? Anybody know any effective clinical trials? Is rad worth a try? Please, I need help.
Also, has anybody else had spreading of SS to the lungs? And if you did, what did you do to treat it and what worked/didn't work. Chemo options are doxorubicin oral pills, or doxorubicin and ifosfamide together, or a clinical trial drug called sutent, which would control the size of my tumors and hopefully stop them from growing. Which do you think is more effective? Or have any of you had experience with these drugs? I hope to hear back from some people soon, and thank you in advance.