Moving on to radiation

@suzdog No, I wasn't lucky. Like you, I was in the unfortunate minority whose side effects didn't fade after a few months, and I seem to have permanent radiation cystitis and radiation proctitis, confirmed with imaging.

After 3½ years, though, I've adjusted, and I am glad that the radiation reached any cancer cells that might have been hiding just outside the prostate, even if it means occasional discomfort now.

@northoftheborder Oh. I just read your first comment where you said it was no big deal, you just lay there. I see now in another post I didn't read you mention your radiation proctitis. I was stupid and should have done my homework and found out that proton radiation would have probably saved me from these side effects.I listened to the RO I went to who didn't go over anything related to side effects and just had his receptionist hand me a 3 page handout that mentioned you might get some of these side effects buried in a bunch of other information. I knew I didn't want surgery and wear a diaper, and still don't, but it absolutely sucks I can't go anywhere for more than 2 hours without a bathroom close by. I belong to a car club and now I am one of those pesky old guys that have to stop on our rides all the time. Anyway, I have more time to go to be sure the treatment got all the cancer. Sure hope so.

@suzdog I wouldn't call yourself "stupid". Proton is very precise, so it limits side-effects, but I'm actually glad my radiation hit a bit of the bladder and rectum as well: if the cancer was starting to spread into thoses, there's a good chance we got it as collateral damage. It's a trade-off.

Sadly, I'm not far behind you. RP in June, with EPE, high Decipher score. First PSA was .061, so some cancer cells decided to stay behind and party for a while. im going to do 1-2 more PSA tests, and if rising, will be joining you.

i have a buddy going through radiation (not salvage), and his experience was pretty benign, with minimal side effects. He is staying very active, working out, playing golf, which will be my plan as well. So, thats my advice! My friend said its only when he is sitting around that fatigue and minor side effects bother him.

PS i though Lupron was largely being replaced with Orgovyx, as testosterone levels comes back much quicker. You might want to ask you RO. Suggest you google it. Also recommended in Walshs' Surving Prostate Cancer Book, page 249. As always, this is a decision made with you and your RO.

Good luck! My grandkids want me to stick around also!