Hi Susan,
Sounds to me like you need to move your treatment to a major cancer center. Read Brian's post on the general board.

Why would your Doctor not want to give you a referral for physical therapy? Is he paying for it? It should be covered my insurance.

I strongly recommend getting PT. My first doctor didn't put me in it right away so I didn't start until 6 weeks after neck dissection. By then my arm and back were so screwed up that it took 6 months to get me back in good working order. It will also help with drainage if you have radiation. I still have some lost of range of motion on the right side. On the other, I was immediately into PT after they did the left side and have full range of motion on that side. Some of this may have to do with the way the surgery was done, but I still feel that if I had had PT right away the first time, I could have elimiated a lot of the back pain.

When you go back to work, make certain that there are arms on your chair. Also don't push to go back too soon. I went back after 8 days the first time, no arms on chair, and no PT. just the weight of dragging my arms about pulled my back out of whack. Second time, it was 8 weeks and I had PT. I had absolutely no problems at all.