Gary update 9/3/10 - So long, Moffitt!

I had a follow up appointment today with my radiation oncologist, regarding my latest PET scan. He was in full agreement with my doctor at Moffitt that chemo is the best option right now and is pleased that North Florida Hematology and Oncology at St. Vincent's is administering it as the two practices are so closely associated with one another.

We also met with him to discuss an issue that has been burdening us since my last two visits at Moffitt. We have loved the atmosphere at Moffitt. It is a very hope-filled place and we have encountered some very good doctors there; however, in my case, things have not gone well.

We have been going to Moffitt every 4-6 weeks since early December and have never gotten anywhere. He has run test after test with no success. When my radiation oncologist wanted to do a PET scan on me months ago, my Moffitt doctor overruled him and wanted instead to do a contrast CT scan because he said it was "more reliable" than PET. I gave in then because I wanted Moffitt to be my central coordinator of care, although I could tell that it was against my radiation oncologist's better judgment. It did not sit well with me either. Just a gut feeling at the time.

Again several months later, my radiation oncologist again suggested the PET scan because he said we needed to find a consistent test to determine the extent and spread of the cancer. In this case, against my Moffitt doctor's advice, I permitted the PET at the local office. I'm glad I did. This scan clearly showed cancer in my liver and my radiation oncologist wanted to jump on it then, but again was overruled by Moffitt who wanted to redo scans their way.

The three phase CT was done and came back negative, so my Moffitt doctor said there was nothing there and that "a PET scan would never show something that the CT scan wouldn't". He wanted me to come back in three months for another CT. It was after our insistence to the point of getting ugly that the Moffitt doctor agreed to redo the PET at all, and refused to allow it to be done here, but insisted that I go back to Moffitt.

This is when the "inexplicable" result came back clearly showing cancer. Only then did my Moffitt doctor do a 180 and suggest chemo and more aggressive therapy. What if we had waited three months as he originally wanted knowing what the second PET scan showed? If this has become aggressive as my radiation oncologist and THEN my Moffitt doctor determined, three months could have made a big difference!

Something that also happened at our last appointment that I did not mention in my previous updates is that my Moffitt doctor made the statement when we were arguing about the repeat PET scan that it "wouldn't change your prognosis". That's when the ball dropped.

If you recall, a similar negative experience is what led us away from Shands to Moffitt to begin with. I put confidence in the doctor at Moffitt at the time because he is a supposed neuroendocrine expert, but we felt as though he was standing blindfolded aiming at a dart board hoping to hit the bullseye. His "won't change your prognosis" line was really the straw that broke the camel's back. I'll tell you why.

When a doctor, any doctor, makes statements like this, and gives the tone or speech of "no hope", they cannot be giving 110% to fight for me. No matter what the statistics say, miracles happen every day, and it is no doctor's place to put a label on anyone that says "you have x amount of time to live". Life and death are in God's hands. When a doctor plays God, he or she is basically just half-heartedly throwing one treatment or another at me, but he is not really standing behind me to fight with me all the way no matter what it takes. He has tried to steal my hope. I will not tolerate that attitude and I won't! I didn't tolerate it from Shands and will not from Moffitt either, now matter what their reputation.

Both of my oncologists here in town have given me the best of care. They have fought side by side with me through this all and have earned my trust because of their diligence and their commitment to never give up no matter what. So we asked ourselves, "Why are we driving hundreds of miles every few weeks and spending thousands of dollars [to this point] on hotel rooms and things in Tampa when we're getting nowhere there." Every appointment has been one disappointment after another.

When we told my radiation oncologist today about what happened at Moffitt, the "prognosis" statement that was made, and the implication that a well-respected radiation oncologist like him didn't know how to read a PET scan infuriated him, and he had a few choice words to say that I can't repeat. :)

My radiation oncologist is the head of radiology for St. Vincent's. His office is also closely affiliated with my general oncologist's office and they have a great rapport between them. I am trusting them with my life, and I know they are fighting for me from more stories than I can tell here.

So after a LOT of deliberation, prayer, soul-searching, and consultation with my radiation oncologist, we have made the decision to pull away from Moffitt and to move the center of my care to North Florida Hematology and Oncology under my general oncologist as my primary onconogist working with my radiation oncologist for any further radiation and scans that may need to be done. Everything will be local with doctors that I have earned great respect for.

I know this may shock some. This is a sensitive decision that we DO NOT take lightly. We have wrestled with this for some time. We know what I am facing, we have no disillusions, but I have faith in God for healing and that he will use this team of cancer "bulldogs" who will tenaciously fight on my side with me and never give up just as I don't intend to give up.

I believe we have made the right decision. I'm sure many may disagree, but please respect that we are doing what we feel it is best, and Cindy and I are both in agreement with one another that we are doing the right thing, and have confirmation in our spirits that this is the right course.

Thank you for your continued thoughts, prayers, and encouragement. Thank you also for those who have sent so many encouraging cards and letters and have helped us in so many ways. God bless you all

We continue to press ahead towards VICTORY!