How long does your oncologist have you on ADT?
I had surgery in March 2020. I was undetectable for 3 years, then started to see some PSA. .05.....06 ... Eventually climbed to .25 in Feb/2025, which triggered follow up treatment, starting in Late March 2025. Orgovyx for 6 weeks then 25 radiation treatments which ended 6/25/25. I am scheduled for ADT for 6 months,ending around Oct .1. My question is- is 6 months the norm?
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I also had surgery 15 years ago and 3 1/2 years later I had salvage radiation when it came back. 2 1/2 Years later, it came back again and I went on lupron. My Gleason score was 3+4 after surgery. It came back a couple more times and now I am on Darolutamide and Orgovyx.
A lot of it depends on what your original Gleason score was.
The NCCN sets the guidelines for treatment. The general guideline is
Gleason 7 6 months
Gleason 8 18 months
Gleason 9-10 24 months
This is a guideline, not the actual rule Doctors might follow. Depending on what’s in the biopsy and the results of the surgery, if it found anything new since the biopsy, that could be a factor.
Sounds like the doctor picked the shortest time, so your case must be favorable.
I have a hell brew of PCa and will be starting on ADT on Aug 5th and will continue for 24 months (probably more).
"Gleason 7 6 months
Gleason 8 18 months
Gleason 9-10 24 months"
And Metastatic, typically on ADT forever (though some oncologists are starting to experiment with "holidays").
"Forever" is such a romantic word.
I was on it for 3 years, then tried a vacation. PSA shot up. So, I'm back on it for... ever??
To borrow a line from Brokeback Mountain: "I just can't quit 'ya"
Yeah, "forever" means either
1. Until they figure out a better approach to long-term stage-4 prostate cancer management, or
2. We die (possibly from something else).
I also sometimes use the phrase "ADT lifer" to describe our situation. I don't know about you, but I'm pretty used to living with ADT + Apalutamide now. For me, the side-effects are just minor annoyances rather than real issues, like they sometimes could be during the first 12–18 months.
I agree there are ADT guidelines that Radiation Oncologist (RO) use to decide on ADT duration. Every case can vary based on many factors, as well as things changing so quickly. I had a 3+4 = 7 at the last biopsy with spread into seminal vesical. PSA got to around 10. Began Tx (6/13/2024) with 25 radiation sessions as well as ADT. Originally RO wanted me on ADT for 24 months. I was on Lupron for 6 months and then switched to Orgovyx 1/13/2025.
I saw my RO on 6/13/2025 (exactly 1 year since my Tx started). He suggested that he thought I could come off ADT, since my PSA went from 10 to 0.09 in 4 months after Tx started and has continued to drop with PSA at 0.02 (last reading 4/2025). He also told me that things are changing fairly quickly with PCa guidelines/treatments. There has been some great research done, including more precise radiation procedures then what I had a year ago.
I am scheduled for next PSA and T bloods next Tuesday. I then meet with my Urologic Oncologist Thursday next week as well. If he is in agreement with RO on stopping ADT, I will do so. Obviously, we will need to discuss a monitoring plan going forward. I would really like to stop ADT as I am so tired of the negative side effects of ADT. And pretty psyched about stopping.
However, I do have concerns that cancer could return after hearing what you guys have to say and from doing my own research on the matter. This has already caused me some minor anxiety. (As my therapist says: Stay in the present and try not to worry about things that in the future that you don't have control over. You can deal with what happens if and when it happens).
So, we'll see what is to come.
Thank you for that information. My husband has stage four metastatic prostate cancer Some in the lower back and a lymph node. He is an 84-year-old organic gardener/double E design engineer. He has been on Orgovyx and Xtandi since the end of February. His PSA had risen over a year from three, to 11. 19 biopsies all came back carcinoma. He did have chirp surgery early in March, and he needed two blood transfusions and was in the hospital, a place. He has never been in his life, for four days. His urologist said he had a huge prostate, and there was a lot of bleeding He does have hot flushes and was having chills after that, but they seem to have stopped. What I am, noticing is some cognative changes. Very subtle but noticeable to me, I’m his wife. He had a cystoscopy yesterday as they found blood in his urine two weeks ago. His bladder is clear, thank God. We’re seeing his oncologist to discuss change in medication. Lupron injection was mentioned. His urologist suggested we talk to the oncologist, but he also agreed with me, that it is easier to stop a pill, than to wait six months, and even longer,if my husband has more severe reactions to the Lupron injection. He has not had any other procedures, just two PET scans, in the last six months. We went to Dana Farber for a second opinion. His doctor there wanted his PSA at .02 he is there, and last PSA, two weeks ago was .01. Has anyone dealt with the cognitive issues? my husband‘s concerned that he’s going to be a drooling, unresponsive vegetable. I still think it’s too early to know since it all has come as a huge shock to both of us and mentally dealing with this is difficult. He was active 15 hours a day, at his age trimming trees, putting a new roof on our shed and cultivating in his John Deere tractor 3 acres of property here. His urologist told him, “it’s quality of life versus medication’s.”
Well, I've been on ADT + Apalutamide (same family as Enzalutamide/Xtandi) for nearly 4 years now, and I don't feel remotely like a drooling idiot, if that's any comfort. I can still solve hard sudokus in ink without pencil marks, read books in several language, remember small details of conversations weeks or years ago, design complex databases and computer programs, memorize an hour of classical guitar repertoire (just this year), and keep track of all the details my own long-term prostate cancer treatment. I also went up in a Cessna with a flight instructor (I lost my own aviation medical because of the cancer and spinal injury), and he confirmed that I haven't lost any of my stick-and-rudder stills in the cockpit, either.
I'm not writing this to brag (I'm Canadian, after all), but I thought I'd put it all out there just this once to help allay any fears about ADT always destroying cognitive ability. I've had zero cognitive decline so far. I know not everyone's as lucky, but if early signs of brain fog do show up (as happens occasionally) he can always choose to stop ADT then.
Gleason 7, N1M0 orgovyx started 12/24/24 prescribed for 24 months, 44 radiation treatments of prostate and pelvis 2/12/25-4/22/25. Tested 5/22/25 Testosterone 0, PSA .01. Will retest 7/24/25.
Orgovyx and Lupron work almost exactly the same. I’ve been on both of them. There’s been no difference in any reaction/side effect.
Now, if you want to get off ADT, you could look at the patch study and consider using estradiol patches which work just as well, but have many fewer side effects.
You would find that Nubeqa Works almost identically with Xtandi But has fewer side effects and does not pass the blood brain barrier which reduces the amount of brain fog. Unfortunately, if he stays on ADT, the brain fog can continue But it won’t be as bad. I’m on Orgovyx and Nubeqa And after 15 years, I’ve been undetectable for the last 20 months while on Nubeqa. I know a lot of people in their 80s that have switched to using that alone, It works, even if you have testosterone. Something to discuss with your doctor.
If you Would like to hear more about it you could join an advanced prostate cancer weekly meeting at Ancan.org. And get some information about what works for people in their 80s.