I have received three rounds of radiation. My cancer first showed up in the soft palet and the rads (IMRT 70 gy) got that and I have had no recurrence in that primary site. Two years out I did have a recurrence in a lymph node in the upper neck. The node grew around the carotid artery which eliminated surgery as an option for treatment. I went to University of Michigan for a second round on IMRT radiation (70 gy). Since this was a different location it was felt I could receive more radiation at the full 70 gy. Dosage.

My first PET scan after this treatment showed residual cancer in the lymph node, meaning the radiation did not get it all. I was told I could receive no further radiation and all they had to offer was palliative chemo with a life expectancy of 9 months.

I scheduled three second opinions in the hopes of finding a surgeon who would attempt a surgical removal of the lymph node as U of M's head surgeon refused to do an operation so close to the carotid.

I went to MD Anderson where they offered me intensive chemo to see if they could shrink the tumor to a size where surgery could be done. They said the odds of this happening where very slim to none but it was all they had. They said that the best surgical team in the world was at Sloan Kettering in New York and that if anybody had a surgical option would find it there.

My next stop was at the University of Pittsburgh where they were doing a trial using Cyberknife radiation. This is a much more focused type of treatment that delivers high doses of radiation in 5 sessions at 10 gy. a session for a total of 50 gy. They said their trial was showing that most patients could tolerate this additional "Focused" radiation. The trial has been running 4 years so they have some good data on this.

My third stop was at Sloan where they said they could not do the surgery and felt my best available option would be the Cyberknife approach.

My fourth stop was back at U of M where I laid out what I had learned from the second opinions. They said they had never seen a tumor shrink enough to change an inoperable situation to an operable situation and said that Pittsburgh was my only option should I want to take another shot at radiation.

I was treated at Pittsburgh and the treatment looks to be holding. I had a 10 month PET scan that was clear of cancer just two months ago so all is good for now.

On this board we have another member (charm) who has had two additional recurrences that were treated with Cyberknife (one just completed) and who now has a clear PET. Charm had this done at another facility. I referred another member (Nocam) to Pitt. They treated him recently and the treatment had NO effect and his tumor did not shrink, it actually got a bit bigger. So the success rate here is limited.
You also have PaulB who has taken a different approach. As you can see from my history, I am not afraid to search out any and all options available to me given the fact that the only alternative I was being offered was palliative care for a few months till death.

I will send you contact information for the University of Pittsburgh in a PM and I would encourage you to do additional research on your own. Maybe Paul and Charm will be able to get you in to see their specialists for additional opinions.

I can say that those of us here with multiple recurrences who are still around to tell about it are the ones who actively sought out all possibilities.

Best of luck and keep the faith.