Preparing for radiation

Radiation is effective in your situation because it doesn't stop at organ boundaries like surgery does -- it can get into your bladder neck and other areas near the prostate and neutralise any cancer there so that it can't reproduce. If you also continue on ADT and a -lutamide, at least for a while, they will help suppress individual cancer cells that might have crept further away as well.

In practical terms, while radiation itself is painless, you may experience some side-effects a few weeks afterwards like radiation cystitis (bladder irritation that makes you feel like you need to urinate) or radiation proctitis (rectal irritation that creates a light burning sensation, or makes you feel life you have to defecate more often). They're not dangerous to your health, and typically they clear up in a few months, but a small minority (including me) end up with them permanently. In my case, I got used to them after 3+ years, and they don't really interfere with my life any more.

Google SPORTT trial and learn the ins and outs. GET THE NODES!!!
Diet is crucial to protect the gut from damage.
Full bladder crucial to protect bladder and move gut UP and AWAY from prostate bed.
Other than that, just lay back and enjoy…

My experience with proton beam radiation at Mayo was not bad. Think of it as an afternoon rest - you get positioned on a table, not uncomfortable (at least the way I had it), and spend 20 minutes or whatever while nothing happens except things move around.

I made a Spotify playlist for the occasion, and it was always playing on the treatment room sound system while I was there. Mayo PHX had parking places restricted to only radiation therapy patients, which made the trip fast for those with jobs, although sometimes it was full.

I still have the cystitis and a little bit of urinary incontinence, but those may fade - it hasn't ben that long.

Proton beam has an advantage in that it does less damage to other tissue - the proton goes in and literally stops in a small zone (Bragg Peak - a few millimeters deep) that they program it for. I did not have to have a full bladder - just 16 oz of water 45 minutes before checking in - which is a lot easier to deal with than full bladder. You also have to have an empty rectum (take a dump 45 minutes before works for most people).

In your case, the prostate is no longer there, so some of my experience doesn't apply - I just don't know which. FYI also Gleason 9.

Thanks for sharing that experience. I'm asking Mayo for a second opinion, or at least a recommendation of what should be done at this point. If I go for radiation I'm not sure I would go all the way there. I live south of Old Town Scottsdale and there is a facility closer to me, near HonorHealth-Osborn.

By the way there is a walk/run Sept. 13 to raise money for the Arizona Prostate Cancer Coalition. There's more information here: https://www.azprostatecancercoalition.org/

I would suggest getting the rectum gel block and bladder urgency meds up front. I didn't and they hit my rectum and crapped all over the place for a month after treatment. Couldn't get the 20 feet to the BR without losing it. Had 2 bladder blow ups in one radiation session and demanded meds.