There was a very cool God-thing that happened when we met Dr. Zhen because the first words out of his mouth after greeting us were that "he was waiting for a call back from his friend Dr. Thorstad about our case." Believe it or not, our St. Louis Radiation Oncologist and our Omaha Radiation Oncologist were medical residents together for 4 or 5 years in Chicago. Amazing. Then Dr. Zhen left the room for about 10 minutes to talk with Dr. Thorstad.
When he returned to talk with us he made it a point to clarify that what we were suggesting (treatment plan using 60 grey) was non-conventional. He followed with saying they can sometimes respect the patient's request as long as it is not too unreasonable and that there is an understanding between patient and doctor. He reminded us that radiation is a one-time shot* and that the worst complication of any treatment would be recurrence of the cancer. (*Radiation is not as effective on areas that have scarring or have already been radiated.) He took us to a chart of guidelines of the National Comprehensive Cancer Network , of which Washington University and University of Nebraska were both founding members. He showed us all the data for both radiation as a primary treatment - and surgery as a primary treatment. I realize now that he probably did this to show that there is no data yet for a less aggressive approach. He talked about how maybe in ten years there would be data supporting what we want to do. Believe me, we do understand this as we understand that Dr. Haughey's work is very progressive and cutting edge. The "older data" does not accurately reflect the new strain of Mike's P16+ cancer which has unique behaviors which are actually more favorable.
He made many comments indicating that he believes that radiation is the most desirable treatment for cancer of the oropharynx. He wished that Dr. Haughey would have taken another CT scan prior to the second surgery. He talked about how in our decision we have to balance "curing the cancer" with "quality of life". He spent a considerable amount of time expressing that he believes we would benefit from chemotherapy following the radiation. Said another way "no chemotherapy is not what they would recommend". He said that it is ideal to have all of your treatment done in one place, and that for our peace of mind maybe we should go back to St. Louis for our treatment. But we also heard him say that they would work with us.
Because it was emotionally overwhelming, and partly because it was hard to discern every single word with Dr. Zhen's accent - I think that Mike and I might have heard different things. I still am not sure if Dr. Zhen said that he would be comfortable with 60 grey, or if he said 66 grey was the lowest he would go at the lymph node site. (I plan to talk with Dr. Lydiatt on Monday after the tumor board meets.) The other thing that swept me off in an emotional flood was when Dr. Zhen talked about the radiation going in at multiple angles that would hit the primary site, the back of Mike's teeth, go through his spinal cord etc. I had a misinformed ignorance that the "rays" would be hyper-focused on the lymph nodes in the left neck. (Remember my analogy back in February about the waves knocking you down? It took me a little while to get back up on my feet after Friday.)
I was blessed beyond words to get a phone call back from Dr. Thorstad himself late Friday afternoon about 2 minutes after I left a message with his nurse at his office. He spent 18 minutes talking to me, calming me and answering my questions. He made sure I knew that he and Dr. Zhen knew each other from medical school. He told me that he shared with Dr. Zhen that he has dropped to 60 grey even when the tumor has broken through the capsule when related to the p16 virus. We talked about how we are both comfortable with the decision to skip chemotherapy because the trials sited do not account for p16. I shared my concern about the radiation "spread" to other areas of Mike's mouth. He said it was important to remember that they wouldn't be "targeting" the tongue, primary site or teeth so the dosages they received would be less. He said that this newer multiple-angle-radiation is a superior treatment, but it does spread to a wider area at lower dosages.
Dr. Thorstad words were so clarifying and comforting... like he was helping me stand back up on my feet after being wiped out. He said that every radiation oncologist sets up his treatments very individually - with a plan to kill the cancer, but minimize the amount of tissue hit. He thought that Dr. Zhen would be comfortable just treating the neck as he & Dr. Haughey recommended. He shared comforting words how some radiation following the surgery Mike already had can clear this up. He reminded me that Dr. Haughey has been doing this for 10 years with great results... but said there is only one Dr. Haughey... and in about 10 more years the course of treatment we are seeking with be the standard for p16+ because of what Dr. H is pioneering.
So for at least a couple days, please do not ask the following questions:
1. When are you moving into the new house?
2. Where are you getting Mike's radiation treatments?
Because the answer to both right now is "we don't know".