Our family is faced with the toughest decision yet. The docs at Mayo and my radiation oncologists think that my best chances of survival are to do another surgery and remove everything - remaining part of tongue, voice box, epiglotis, etc. That would mean that I would not be able to talk, eat, or smell, and I would breathe out of a hole in my neck. The radiation oncologists at Mayo and UMN think that this cancer is radiation resistant because it didn't die with last year's radiation so they don't think radiation will work this year.
It is believed that a massive surgery would increase my chances of cure, but not by very much. We had asked Dr. Yueh to do whatever it took during my surgery in March to remove the cancer, even if I could never eat or talk again but he opted not to cut it all out at that time because seeing the aggressiveness if my tumor and how it was scattered rather than in a single mass, it was unlikely that removing everything would get it all anyways. Dr. Moore at the Mayo Clinic thinks there might be a slightly better chance of survival if I was willing to do the surgery. The only thing is that Dr. Moore at Mayo wasn't the one who operated on me, so he didn't see how the tumor was behaving firsthand. On the other hand Dr. Yueh was able to see exactly how the tumor was behaving and made a decision in the operating room based on his extensive experience.
So I have 3 options:
1) A second course of radiation and chemotherapy
2) A third surgery plus a second course of radiation and chemo
3) Seek alternative therapies such a immunotherapy, nutrition, etc.
At this time there is not enough evidence that shows that a major surgery will greatly increase my chances of survival. If it was clear that I would survive, or perhaps have a decent chance at survival, then I would definately do it. Otherwise, I'm not so sure it is worth it because of is would greatly affect the quality of life that I have left. Besides, after having 2 surgeries, radiation and chemotherapy, a third surgery could have life threatening complications.
Please pray for claritiy in this decision, and that God would heal me of this disease and allow me to be a husband to my wife and a father to my children for years to come.
I am going to start chemotherapy tomorrow anyways, and radiation starts next Monday. So I have until the end of this week to decide. I am trying to get an opinion from Sloan Kettering and MD Anderson, and asking more questions of Dr. Yueh and Dr. Moore this week. Pray that those meetings will bring clarity to the decision.