Kelly,

Wow, I'm so happy for you that you didn't sit there and let them put you on palliative care. Were your doctors not aware of procedures that were taking place outside of their facility? Just because they don't have the equipment doesn't mean they shouldn't educate the patient of their real options. I'm glad you knew well enough to look elswhere because I am sure there are plenty of people out there who don't. I hope they all find this site and realize that they are not limited by the abilities of their current facility.

Penny,

Actually it was another doctor at U of M that told me about the University of Pittsburgh. After they discovered that I had residual cancer it was thought I could have surgery to remove it. It was the radiation oncologist who called me and told me that the surgical staff had decided that surgery was not an option (the tumor was too close to an artery). When I asked him what my options were, he told me they had scheduled me to see the Medical Oncologist in three weeks to begin palliative care. It was at that point that I asked him for recommendations on a where I could go to get a second opinion. He told me he would recommend the University of Pittsburgh and Sloan Kettering. He did say that Sloan might have a surgeon willing to take me on but did not tell me why he recommended Pitt.

I found out later that the head ENT at Pitt sat on a board with my RO at U of M and was aware of their program with cyberknife. I used the three weeks between the bad news and the MO meeting at U of M to travel to MD Anderson in Houston, Pitt in Pittsburgh and Sloan Kettering in NYC, so I had options in mind before I got back to Michigan. I attended that meeting mostly to get my MO�s opinion regarding my options because I really trusted his judgment. He was only casually aware of the cyberknife treatments being offered for recurrences. He did not think it would work but admitted he had not read any of the literature out there regarding cyberknife as a course of treatment for recurrent cancer. I asked him if they had cyberknife at U of M and he said they did but it was not being used in head and neck treatments and he had no familiarity with it as an option.

So I guess the take away from all I went through is that certain institutions get all wrapped up in their own standard course of treatment or whatever trials for new treatments THEY offer but are not well informed about what else is out there in the wider world. I had to get on my horse and ride to find that out. I went to Pitt because my RO said it was an option. I had no idea why until they told me what they were doing by email just before I got there. I�m glad I kept looking for more options as I may now be able to attain the one goal I set for myself when I was first told I had cancer. I want to see my son graduate from high school. He just entered his sophomore year.

What about Univ of Chicago? They are supposed o be great and you are near them it sounds like.....

I never made it to U f C although I have a friend who is a doctor there. I should have checked them out but I was going on the recomendations of the doctors familiar with my case ( not that that is a good thing as I found out). I only had so much time to work with.