I would DEFINATELY want a PET or CT scan to compare progress with. Did he have one before surgery? I would want to compare pre-op, with post-op and during and after treatments. You could SEE the progress then and pose any concerns about questionable areas. LMS, for my husband, was like an out of control fire. Honestly I don't even know for sure, where all it had spread? It just happened soooo fast:( From mere behavior, I would guess it was getting to his throat, lungs and brain. From the last scan it had definately reached his adrenal gland and lungs. All of this from a mere backache that began a few months prior.
How are the sutures healing? Is his mental health o.k.? Please keep me abreast. Your plight just feels VERY personal. I would LOVE to share in a victory against this beast:( Again, all my best, Connie