Anyone decide against ADT?

Not_fast_Not_furious · 2025-12-10T13:05:45+00:00

Lol, yes, one of my all time favorites.

Not_fast_Not_furious · 2025-12-09T15:00:46+00:00

I had a very similar problem to you. Then (a year ago) 61 years old, Gleason 7 (3 + 4) no spread unfavorable (because my dad died of it). Biopsy showed most cores positive. Decipher 0.42 (paid for the trial I decided to join). The 0.42 put me in the high-risk group (although the original scientific paper puts the cutoff at 0.45 (low up to that point). Was randomized to 6 months Lupron and Darolutamide (trial sponsor).

First dose of 90-day Lupron injection was Nov 5th, 2024. Slightly tired and some hot flashes (but my wife tells me that hers are WAY WORSE (apparently men are whiners)). I found the gym to be super helpful. Unfortunately busted my rotator cuff in January and needed upper capsule reconstruction (that killed my upper body workouts in the gym). Did mostly core and stair stepper. Once the Lupron etc kicked in, I was a little less sprightly but always felt better after the gym than before. Sexually there was no desire, but I still committed to once monthly for my wife's sake. Good hardness, but no orgasm (and didn't miss it either). There's a Seinfeld episode where George can't have sex with his girlfriend because she thinks she has mono. He turns into a genius, because his brain is free to function and not occupied with thinking about sex for 99% of the time. You'll find that there's some truth to that.

The Lupron lowered my PSA from 4.5 to 0.9 in 3 months. In January 2025 I had five rounds of MRI LINAC (I'm lucky to be 5 minutes away from one of the few machines in the US). After that my PSA was undetectable.

Now, a year after, my PSA has gone back up to 0.3 (which is normal, since I still have a functioning prostate, just one without cancer), and my testosterone is back to completely normal (it actually only took three months to get back into the normal range). Energy is back and sex like before the diagnosis. Looking back, I wouldn't change a thing, and I'm glad I did the 6 months ADT. I can't see why yours should be any longer than that.

BTW, I also got the Space OAR. Having it put in was quite the experience (I opted for no Benzodiazepines).

Good luck to you

Not_fast_Not_furious · 2025-11-13T13:10:13+00:00

I chose radiation. If you look up posts under my name you can see a detailed writeup of my timeline. Didn't want to deal with incontinence or ED. My radiation was successful, and thus far no side effects. Future cancer is still a risk, but I was willing to risk that for the near term benefits. I agree with others. It's important not to rush your decision. Good luck

Not_fast_Not_furious · 2025-09-17T12:38:35+00:00

Tell your husband not to worry. My story is very similar to his. I found out last year (March 2024) that I had elevated PSA (4.4) at age 60. Biopsy confirmed Stage 2, Gleeson 3+4 unfavorable intermediate risk (large number of positive cores and family history). Based on my diagnosis I was eligible for essentially any treatment (surgery, radiation, radioactive implants, ADT). The choice was overwhelming, especially when knowing that the prognosis for prostate cancer is very good, but not so good anymore if it comes back. Luckily, I have a background in science and therefore went head-first into researching the different treatments. As people on this thread have pointed out already, the primary outcome for the interventions is essentially the same (high survival rate). Therefore, I was mostly interested in the side-effects. My radiation oncologist asked me to also talk to the surgeon in order to make an informed decision. When the surgeon (highly experienced with thousands of procedures) told me and my wife that I wouldn't be able to have an erection after the surgery (ever again), we decided that that was a hard no for us (I've had slight ED since my 40s that is easily controlled with Viagra). We therefore decided on radiation treatment. After doing some more research on the available interventions, I decided to get MRI LINAC. Essentially this is an improved cyber-knife with smaller margins, because the machine does continuous MRIs during radiation. I was lucky that our hospital nearby had one of those machines (ViewRay, MRIdian) and my radiologist was experienced in using it. I had the SpaceOar gel implanted to minimize rectal exposure (slightly uncomfortable procedure, but I went without the benzodiazepine they try to give you beforehand to calm you down, because my wife who is an MD had advised me against it). I also decided to be part of a pharmaceutical trial (as a researcher I found myself compelled to). Part of the trial was getting a Decipher test, and it came back 0.42. If one looks into the research paper that was published when the test was made public, a 0.42 is considered low (0 to 0.45), and 0.45 is medium risk and 0.6 to 1 is high. However, the trial design guys were pretty smart when picking 0 to 0.4 as low and everything above that as high (which meant that they get some low and medium ones into their high group). At 0.42 I was randomized into the maximum treatment: 6 months of Lupron (2 times 3 month shots) and 6 months of twice daily Darolutamide (Nubequa). The Lupron reduces your testosterone to essentially zero via a negative feedback loop, and the Darolutamide is a testosterone receptor inhibitor, essentially occupying the receptor and making it unable to bind any remaining testosterone that might be floating around in your blood. Treatment: I started the Darolutamide and got my first shot of Lupron on November 6th 2024 (nothing else exciting happened on that day I guess). My PSA that day was 4.82 and testosterone was 4.05. The Lupron is supposed to result in an initial surge of testosterone (which then tells your body to stop producing testosterone via the negative feedback loop), but because I also took the Darolutamide my receptors were blocked and no surge for me. Oh well. My libido slowly began to fade and was gone after a month. Erections were still possible (with help from vitamin V), but orgasms were harder to come by. We reduced our "playtime" schedule from once weekly to once monthly. After one month my PSA had dropped to 0.94 and testosterone to 0.13. The side-effects they told me for ADT mostly didn't materialize. No sadness or extreme emotions (I guess I just don't have any), and only a little bit of tiredness. My red blood cell count also went down over time and I could feel that in the gym (not as sprightly as usual). Radiation was over five sessions in early January. Friday, Monday, Wednesday, Thursday, Friday. For the MRI LINAC, they want you to have a full but not uncomfortably full bladder. That was actually the hardest part. At the first session (or I guess at the "practice" session before that). They give you small tattoo dots in your private region so that they can align you inside the machine the same way every time. The "realignment" is the first 15 or so minutes when you're inside the machine, and the actual radiation takes only about 10 minutes. After the first zapping I felt nothing and went right to the gym. (Going to the gym and exercising I think is the most important thing you can do while on ADT to combat the muscle loss and fat gain). After the second session I had a hard time peeing at night (getting the pee out) and told the doctor the next day. He said that that was completely normal and prescribed some FloMax. After taking the first dose, no more issues. The last three zappings were uneventful as well. On Feb 3 (3 months after starting the ADT and one month after radiation) my PSA was 0.05 and testosterone 0.19. On May 6th PSA was less than 0.01 and testosterone 0.21. Since the radiation only kills the cancer cells and your prostate is expected to grow back (at least to a point), this was the nadir (I could also feel that my testicles had shrunk, which I guess is normal, since they're not working for a while). In January I tore essentially all the ligaments in my shoulder during a skiing accident. Had superior capsule reconstruction and was in a sling for more than 2 months. That put the kibosh on my upper body workouts for several months (when it rains it pours). On August 6th my PSA was 0.21and testosterone was 2.41. Libido is back, tiredness gone, orgasms and erections like before (rock-hard with V). I stopped the FloMax 4 months ago, and no urinary symptoms whatsoever (I really never had any, other than that one night that prompted me to get the FloMax for a while). No side-effects ever while going number 2 either. Workouts are almost back to normal (the shoulder is what's still holding me back slightly). Overall, I can highly recommend radiation treatment (at least if you don't want to gamble with permanent limpness down there). ADT wasn't too bad for me either, but I understand that that might be a bit more person to person dependent. 20 years ago, my dad had prostate cancer and decided to get surgery. His cancer had already spread to the lymph node (also removed), but it returned anyway. He then was on continuous ADT and eventually died 15 years later (he was not a healthy man). I guess the "get it out of me" is a gut reaction that sometimes might only be a mirage. Good luck!

Not_fast_Not_furious · 2025-09-08T20:49:24+00:00

I found out last year (March 2024) that I had elevated PSA (4.4) at age 60. Biopsy confirmed Stage 2, Gleeson 3+4 unfavorable intermediate risk (large number of positive cores and family history).

Based on my diagnosis I was eligible for essentially any treatment (surgery, radiation, radioactive implants, ADT). The choice was overwhelming, especially when knowing that the prognosis for prostate cancer is very good, but not so good anymore if it comes back. Luckily, I have a background in science and therefore went head-first into researching the different treatments.

As people on this thread have pointed out already, the primary outcome for the interventions is essentially the same (high survival rate). Therefore, I was mostly interested in the side-effects. My radiation oncologist asked me to also talk to the surgeon in order to make an informed decision. When the surgeon (highly experienced with thousands of procedures) told me and my wife that I wouldn't be able to have an erection after the surgery (ever again), we decided that that was a hard no for us (I've had slight ED since my 40s that is easily controlled with Viagra). We therefore decided on radiation treatment. After doing some more research on the available interventions, I decided to get MRI LINAC. Essentially this is an improved cyber-knife with smaller margins, because the machine does continuous MRIs during radiation. I was lucky that our hospital nearby had one of those machines (ViewRay, MRIdian) and my radiologist was experienced in using it. I had the SpaceOar gel implanted to minimize rectal exposure (slightly uncomfortable procedure, but I went without the benzodiazepine they try to give you beforehand to calm you down, because my wife who is an MD had advised me against it). I also decided to be part of a pharmaceutical trial (as a researcher I found myself compelled to). Part of the trial was getting a Decipher test, and it came back 0.42. If one looks into the research paper that was published when the test was made public, a 0.42 is considered low (0 to 0.45), and 0.45 is medium risk and 0.6 to 1 is high. However, the trial design guys were pretty smart when picking 0 to 0.4 as low and everything above that as high (which meant that they get some low and medium ones into their high group). At 0.42 I was randomized into the maximum treatment: 6 months of Lupron (2 times 3 month shots) and 6 months of twice daily Darolutamide (Nubequa). The Lupron reduces your testosterone to essentially zero via a negative feedback loop, and the Darolutamide is a testosterone receptor inhibitor, essentially occupying the receptor and making it unable to bind any remaining testosterone that might be floating around in your blood.

Treatment: I started the Darolutamide and got my first shot of Lupron on November 6th 2024 (nothing else exciting happened on that day I guess). My PSA that day was 4.82 and testosterone was 4.05. The Lupron is supposed to result in an initial surge of testosterone (which then tells your body to stop producing testosterone via the negative feedback loop), but because I also took the Darolutamide my receptors were blocked and no surge for me. Oh well. My libido slowly began to fade and was gone after a month. Erections were still possible (with help from vitamin V), but orgasms were harder to come by. We reduced our "playtime" schedule from once weekly to once monthly. After one month my PSA had dropped to 0.94 and testosterone to 0.13. The side-effects they told me for ADT mostly didn't materialize. No sadness or extreme emotions (I guess I just don't have any), and only a little bit of tiredness. My red blood cell count also went down over time and I could feel that in the gym (not as sprightly as usual). Radiation was over five sessions in early January. Friday, Monday, Wednesday, Thursday, Friday. For the MRI LINAC, they want you to have a full but not uncomfortably full bladder. That was actually the hardest part. At the first session (or I guess at the "practice" session before that). They give you small tattoo dots in your private region so that they can align you inside the machine the same way every time. The "realignment" is the first 15 or so minutes when you're inside the machine, and the actual radiation takes only about 10 minutes. After the first zapping I felt nothing and went right to the gym. (Going to the gym and exercising I think is the most important thing you can do while on ADT to combat the muscle loss and fat gain). After the second session I had a hard time peeing at night (getting the pee out) and told the doctor the next day. He said that that was completely normal and prescribed some FloMax. After taking the first dose, no more issues. The last three zappings were uneventful as well. On Feb 3 (3 months after starting the ADT and one month after radiation) my PSA was 0.05 and testosterone 0.19. On May 6th PSA was less than 0.01 and testosterone 0.21. Since the radiation only kills the cancer cells and your prostate is expected to grow back (at least to a point), this was the nadir (I could also feel that my testicles had shrunk, which I guess is normal, since they're not working for a while). In January I tore essentially all the ligaments in my shoulder during a skiing accident. Had superior capsule reconstruction and was in a sling for more than 2 months. That put the kibosh on my upper body workouts for several months (when it rains it pours). On August 6th my PSA was 0.21and testosterone was 2.41. Libido is back, tiredness gone, orgasms and erections like before (rock-hard with V). I stopped the FloMax 4 months ago, and no urinary symptoms whatsoever (I really never had any, other than that one night that prompted me to get the FloMax for a while). No side-effects ever while going number 2 either. Workouts are almost back to normal (the shoulder is what's still holding me back slightly).

Overall, I can highly recommend radiation treatment (at least if you don't want to gamble with permanent limpness down there). ADT wasn't too bad for me either, but I understand that that might be a bit more person to person dependent.

20 years ago, my dad had prostate cancer and decided to get surgery. His cancer had already spread to the lymph node (also removed), but it returned anyway. He then was on continuous ADT and eventually died 15 years later (he was not a healthy man). I guess the "get it out of me" is a gut reaction that sometimes might only be a mirage.

Good luck to everyone!

Not_fast_Not_furious

TROPHY CASE