R-E-S-P-E-C-T: Dr. Kwon's presentation of Quality of Life study

Very good discussion. (Though I don’t agree with everything Kwon said - which is the same point he made about that study they discussed.)

This topic was something that I discovered since being diagnosed with prostate cancer 14+ years ago.

I was initially diagnosed in April 2012 (at 56y), was on active surveillance for 9 years, had proton radiation treatments (+ 6 months of ADT) starting in April 2021.

After being told that I had prostate cancer - which in hindsight my urologist could’ve done a bit more eloquently - my first comments to him my were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, it was about self-advocacy and shared decision-making.

I made it clear every step of the way that successful treatment and quality of life (QoL) were equal priority for me. (He could not possibly know what my QoL meant to me.)

These two priorities were not mutually exclusive. I could - and did - attain both. It was my job to put QoL on the table and to keep it in the forefront with every single decision. (There were many times that I rejected their recommendations and we went with mine instead.)

Now, 5 years post-treatment, quality of life (for both me and my wife) is still good. And the treatments were successful (so far): most recent PSA was 0.366 ng/mL.

Working together with one’s medical team (as equals) is the way to get expected outcomes. Be sure to clearly express what you want.

The patient is the boss. That is an important message. And as Dr. Kwon said, it is not binary. I concur. My feelings have been constantly shifting towards one or the other side of this issue. Ultimately many of us I believe will take the middle ground and not go all the way in one direction. IOW, choosing treatments that may mitigate the side effects.

@brianjarvis Yes all the way to “self advocacy and shared decision making”. That’s the only thing that has ever worked for me with any medical issue. It is vital to me to be able to accept outcomes of any treatment, without blaming myself, or any medical provider, if things don’t go as hoped.

I consulted with three oncologists last summer when I was diagnosed with a local relapse. The second oncologist I met with walked in the room and the first thing he said was, “I know everything about you”, meaning that he had perused my medical records. I believe he was trying to instill confidence in me that he was on top of it all, but he was only on top of the data in my files—he didn’t know a thing about me, my concerns, my knowledge, my priorities and values. Right out of the gates, he wanted to hit me with Lupron, then Orgyvx and one of the lutimdes. And then start radiation. And btw, my PSA was 0.1 at the time, I am Gleason 3+4, I had a nodule in my prostate fossa that lit up on a PSMA PET scan, and my PSA had been undetectable for ten years since my RARP in 2015. There was no subtley about his recommendations, no discussion of hormone therapy being a gray area for a case like mine. I replied that I was unconvinced of the benefit of HT versus the risks in my case, and that I had read extensive medical literature on the subject. Again, rather than engage in a dialogue, he just replied, “So quality of life is most important to you”. He wrote that down and wasn’t interested in my response to his declaration. Like you, I was seeking a balance between successful treatment and QoL, but we never even got to discuss that. Fifteen minutes was up. He was the opposite of Dr. Kwon. I moved on to oncologist #3 (an RO), who was fully amenable to working with me, and still is. I completed 38 sessions of IMRT last fall without any ADT, which was the course that I settled on.