Thank you for the insight.

I've read that castrate resistance typically occurs within 2-3 years of going on ADT. Resistance is defined as the PSA rising while on ADT. And like I said in my initial post, if the cancer becomes castrate resistant, I've read the prognosis is not good.

Right now, there's no metastasis that we know of. I sure wouldn't want coming off ADT to cause or speed up cancer spread.

To me, staying on ADT and risking those complications is better than having cancer recur. But, I'm told that ADT isn't going to stop spread? (So, why am I taking it?) But I know with my Gleason and Decipher both very high that my cancer is aggressive and the odds of recurrence is high.

I don't think my doctors will approve me going more than 3 years on ADT. So, it would be nice to know my options should my PSA rise. Seems risky to me to come off-- but they say say resistance and spread can happen either way......... 🙁

Hi @ga73ds,

Welcome to Mayo Clinic Connect. You will meet many active members in the Prostate Cancer group. Mayo Clinic Connect is a place to share experiences to help offer support and share questions to ask with our provider.

As a reminder, no treatment decisions should be made without conversations with your providers, especially those pertaining to medications. Members can share what has worked and what they have discussed with their providers in the past that they found helpful, but stopping a medication or starting one should always be done in conjunction with your provider.

@ga73ds, when you had a conversation with your provider about stopping it, were they able to talk through the pros and cons of a rising PSA vs. long-term use of ADT? That seems to be a crossroads and it is certainly understandable why you may be scared and hesitant.

Hi All - I was a 3+4 Gleason 7 with spread into seminal vesical and a PSA of 10. I started Tx 6/13/24 with 25 sessions of radiation and monthly shots of Lupron. Experienced all the typical negative side effects almost immediately. Continued with Lupron shots for 7 months and switched to Orgovyx 1/14/25 with the hope of a faster recovery time when ADT stopped. Side effects continued. I've tried many things to combat those side effects with little improvement.
Prior to Tx, my PSA was 10 and dropped to 0.09 by 10/4/24 (4- 5 months from start of Tx). PSA continued to drop and on 4/19/25 it's at 0.02. Originally my RO wanted me on ADT for 24 months. Ironically, I met with him yesterday for a 6 month follow up visit (exactly 1 year ago that Tx started). I started the conversation with how I'm tired (literally) of the dam side effects of ADT and can we explore me going on the Estradiol Patch. Well, much to my surprise he said I think you can stop the Orgovyx since my PSA has continued and maintains to be low. He felt with my PSA numbers being low for this period of time there was longer a need to stay on ADT. He said that research and recommendation are drastically changing with PCa and the duration of ADT. We then realistically discussed the recovery period of T for me (another story for another time) which would include follow-ups and monitoring. At first, I felt relieved and happy to stop but not prepared to stop immediately.
I also have been seeing a urologic oncologist (UO) since January 2025. I see him again mid-July and will consult with him on the stopping of Orgovyx. RO said if my UO was in agreement then maybe I should stop. When I last saw my UO 3 months ago, he nicely pleaded with me to stay on the ADT for at least a year and probably best for 18 months. I'll see what he thinks.
Bottom line is that each of our situations/cases are different and so are our oncologists. PCa research and findings are changing pretty quickly and that is a good thing. I try to stay up on these changes and new innovations as much as I can and hopefully things will be better for all of us.