I had started the ball rolling locally with the first tonsillectomy and biopsies. I had separate consultations with the MO and the RO and had the mask made and fitted. They even tattooed a dot on my stomach for lining up the radiation machine. Then the BS started happening. I was told that treatment would start in about a week. After two weeks I started calling and asking questions. I even drove to the hospital and asked in person. There was no communication between the doctors. Where was the scheduling? I got blank stares and shoulder shrugs when asking questions.

The head of Oncology called as he had heard I was a little upset by what was going on and we spoke at length. He said he would check things out and call back. I never got a call back! I even left him a voice mail the next day! I finally spoke with the oncology nurse and she said, pertaining to the head of Oncology.... and I quote "Ohhh, he doesn't always know what's going on around here." REALLY??!!

My treatment plan was to do 35 radiation treatments with concurrent chemo and evaluate for surgery afterwards.

I called and asked the patient advocate why they didn't have a team approach and she said, and I quote..."When you're done treatment, fill out the questionnaire and suggest that"... WHAT??!!

Needless to say I was taken back by the Three Stooges approach. That and the fact that the hospital had a terrible track record (according to US News and other reviews) of survival had me running!

When I had my meeting at Johns Hopkins, they reviewed the treatment plan. We also discussed my singing voice etc. My RO had the plan in his hand and all of them agreed. Had I proceeded with the plan laid out locally, I stood a very good chance of permanent and irreversible damage to my voice. I asked the local RO the same question and he said I'd be fine. He lied!

My experience may be unusual but that's what happened. The team at Hopkins felt it was better to remove the cancer and do further biopsies to locate the primary (unfortunately they were unable to do so). The logic was if they could remove 99% of the cancer (which had grown substantially in the 6 weeks after Dx), then it would mean less treatment. As it turned out, it was a wise move as my cancer was aggressive and the tumors wrapped themselves around the nerves, blood vessels and muscles in my neck. I had 30 rads and 6 chemos. Less than I would have had locally. I had the best and latest equipment and care as well.

I saw the team at Hopkins on a Friday morning and that afternoon I decided to seek treatment there. I called and spoke with the the local RO's office. They put the oncology nurse on the phone. When I told her, she was flippant and short with me. My call and voice mail to the MO's office was not returned. I have no regrets.

As I mentioned in a previous post. I'm convinced, had I stayed local and got treatment here, I would not be writing this. It comes down to confidence in your team. Personally, since you haven't actually started rads and chemo, you can still make a move. I did and I'm here to write about it.

"T"