I took the opportunity to discuss my concerns with my ENT doctor today. Showed him the info I printed from the National Cancer Institute's website. Once he read the info he left the room and placed a call to the Radiation Oncologist. When he returned he said to me that I was correct. I am in Stage III.
Stage II - Tumor is between 2 and 4 centimeters (from ¾ to 1½ inches). Tumor has not spread to lymph nodes or other parts of the body
Stage III squamous cell carcinoma: The cancer has spread into facial bones or 1 nearby lymph node, but not to other organs.
For most (but not all) cancers of the head and neck, having cancer spread to the lymph nodes automatically puts your cancer into at least stage III.
We talked for a good while and then I made another appointment with him as well as paid my co-payment.
I left his office and went directly to my next appointment with the Radiation Oncologist Dr. Long. He showed me the NCCN Guidelines for Cancer of the Oropharynx and treatment protocol. I guess he knows I'm the kind of person who needs proof. Didn't want to piss him off so I didn't rub it in that I had to correct the Stage II to Stage III diagnosis. My "Team" let me down already and we haven't even started yet.
He then looked down my throat with the scope. He sure could use some tips from my ENT doctor. He sprayed the side of my face with the deadening spray twice with very little going into my throat. I've had that procedure done by my ENT twice and never felt the tube in my throat. This time I did and I started to gag and cough. At one point, I grabbed his had to move it away from my face. Very unpleasant. He said later that he would use more throat deadening spray next time. Not sure there will be a next time. I will ask if my ENT can do all scopes in the future.
Then he showed me a sample radiation mask. Asked if I was claustrophobic and I said yes. I held it and placed it over my face. I asked if the eyes would be cut out. No answer. I asked if my eyes would be open and he said yes. However, there is no way that I will be able to open my eyes unless the mask is cut around the eyes. I told him that I was taking .5 Xanax and he said I may have to double that dose.
He then gave a very long, and informative explanation of what to expect during and after radiation treatment. I was very familiar with all he said as I have been reading online for months now. He said that I will receive radiation on both sides of my neck, which surprised me.
So the next thing is to receive calls with instructions as to who will see me next. I will be seeing a dentist for Fluoride treatment. I will see the Gastro doctor to have the PEG feeding tube put in. Then I will be fitted for the mask. Treatment will begin right after. I will have 35 Radiation treatments in 7 weeks time.
The ball is rolling now.