I've posted these before...

Over the 11+ years of my journey I've developed rules for my medical team...

Know your stuff. As part of my medical team, you must have a thorough knowledge of my cancer and of the latest developments in research and be ready to formulate a plan of attack. If what I ask about based on my research is not familiar with you, then admit it, say you will look into it and discuss on my next consult. Better yet, you will call me!

Do your homework. I expect you to have reviewed my medical records prior to my appointment, talked with other doctors I have seen that day.... You’ve looked at my x-rays; you have my pathology report, labs. I can tell when you're looking at my clinical data from tests for the first time !

Respect my point of view. Listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I’m sure you can help me to feel confident about the plan you and I have shaped for me.

Don’t close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Rid yourself of the temptation to make your day easier by delivering perfunctory care.

When it’s decision time, please decide! Care for me with a dogged determination to get me healthy

Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.

Please talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions?

And yes, the front desk is key, sets the tone, pleasant, efficient on check in and scheduling on the way out...a kind word, smile...and don't call me "honey." You have my records, I am ok with you calling me by my first name or Mr.___

After surgery, then BCR and the failure of SRT, I consulted with the Director of Urology at a NCCN here in Kansas City. This individual was also the head of a major north american urology organization with an impressive resume. I laid out my clinical history, then talked about the recent STAMPEDE and CHAARTED studies and how triplet therapy might be a feasible treatment decision. He dismissed the idea, said he would start me on continuous ADT monotherapy....

He left the consult, turned me over to his PA. I looked at the PA and said, you know I'm not doing that and I'm not coming back!? He nodded.

It was not that I disagreed that at the present I did not fit the clinical criteria in those studies, but given my PSAT and PSAV, I soon would.

I left, went to Mayo, had the C11 Choline scan done, did triplet therapy, changed my life.

I "fired" another urologist when his ego and wallet got in the way. He was out of country, my PSA results came back and based on our decision criteria for imaging, he had ordered a PSMA scan. I reached out to my radiologist while he was out of office vacationing, she saw me, we agreed to SBRT and to see an oncologist she recommended to discuss systemic therapy.

When my urologist got back and I came into to see him, laid out the treatment plan and asked what he thought, his answer, I can't help you, you've gone outside this practice...! I said wrong answer, I asked what you thought about the treatment plan. I left.

So, if your medical team's doctor style doesn't fit your patient style, find someone who does!