That last question is the perfect - and most difficult - question, and best encapsulates the dilemma of so many men..
Last week, in preparation for my quarterly video visit with my UCLA oncologist, I asked him in advance to be prepared to answer a couple of questions I would ask him. A key one was: "what is the survival data for patients comparing PCa treatment with/without Lupron". I then asked that question in the Zoom meeting. He successfully elided the question. Same question on my current 9 months on Lupron, versus staying on a scheduled 18 months. He offered to take me off after 12 months. I ask for data to make an informed decision; he offers me nothing.
We both have to accept that we have outlived most of our compatriots, and so focus (as you are), on quality of life issues in the time remaining. That's what I did in choosing radiation. I just hadn't fully appreciated the side effects of Lupron.
As you surmise from this complaint, Lupron ain't fun. Actually, as most will tell you, it's shitty. Example: I went from able to do as many pushups as I cared to, to barely able to do three! I was in great shape. Now, I'm ten pounds heavier, and in all the wrong places. So, I wanted to know the pros and cons, and length of time, and got no answer, so must proceed on my own. Perhaps you can learn more than I did. My guess: if one were to assume less than 10 more years of life, perhaps no Lupron would be reasonable decision,
BTW. There are some other choices besides Lupron that might be better. I did not think to explore them. But, that again gets back to the basic issue: the docs should give us more information to make informed decisions. I feel I'm getting some of the best information by reading about the decisions and paths taken by others sharing our journey.
My radiation (I think it was "View-ray" one of three that UCLA offers) was coupled to realtime MRI with overlapping images coupled to computer control of the radiation margins. This allows superior control to minimize extra-prostatic damage. I assume this is gamma radiation. I assume this is similar to the "cyber knife" I've seen referred to.
Note: I underwent "hydrogel" placement to separate the prostate radiation target from my colon, which it was pressed up against. I credit it to my lack of any side effects from the radiation.
This is all new to me, and I am still in a bit of shock. I have a long lived family; my mother lived to 97 and my father's brother to 100. At the moment, I feel a few years of high quality is better than 12 years as an old man. With no data, it's impossible to make an informed decision. My guess, is that 3 months on ADT is all I will do unless there is hard data to indicate a significant improvement in the prognosis. One choice, made in total ignorance, seems to be possible to get the PSMA scan and zap all the cancer with proton beam radiation. Follow that with regular PSA tests and further treatment if it rises. As I said, these thoughts are without any sound data to back them up.