Stopping ADT Scared and Anxiety Update
I met with my urologist/surgeon this morning. We discussed both him and my oncologist recommending that I stop ADT (Orgovyx).
Prostectomy+ Seminal vesticals+7 lymph nodes 01/2022
Gleason 9, Decipher .99, 1 lymph node positive
Started ADT on Orgovyx 01/2023 prior to radiation
Pelvic radiation completed 05/2023
Still on Orgovyx-- 2 1/2 yrs total, 2 yrs since radiation
PSA has been undetectable at < 0.01 since radiation (2 years now). Last PET scan a year ago is clear.
I'm scared to do it, but both drs say it's the right thing to do. My PSA will be monitored very closely and if PSA starts to do back up, we'll do a PET if needed and treat it. I think I'm in good hands. If cancer recurrs, treatment will be early.
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That is exactly what you can do. Stopping the drugs and getting a test monthly would allow you to immediately jump back on the drugs if your PSA starts to rise. It’s more likely to do that in the next month or two if you really have a continuing serious problem. You will find that you can go a long time before you need to go back on the drugs, That is what it’s normally like to drop them, You get relief for quite a while.
If you trust your doctors, go for it. If you don’t’ don’t. (Just my opinion). Peace and all good things to you…
With my limited knowledge, with weighing for cessation is a good thing. ADT isn't an unbriddled good- look it up. It's often accompanied by increased chances of cardio and dementia issues. And more. Further eventually it'll stop working and now you'd be in the castration resistance category-which is worse. So the longer you can stave off usage the better.
Further your treatments to date taking the PSA that low, may have left behind less aggressive cancer ie, "altered the PSA trajectory". The only way they'll find that out is to give the Devil the full dance floor wo ADT.
But I'm speaking only as a patient and lay man.
Good luck
One thing that helped me was to not project. It sounds like your doctors are paying attention and will respond rapidly if needed. This is a good thing. My doctor withheld information and as a result I didn't trust him and got into a projection loop which totally sucked. My life is built on today. I got a second opinion because of that and it really helped. Best wishes on your journey.
I stopped ADT in October 2024 and do bloodwork (PSA, Testosterone) every other month. So far, the PSA is less than 0.1 and the T has increased from 0 to 369 as of June 2025. Living today and realizing that future might have unknowns, but all is good. Good luck and best wishes!
What ADT did you take?
Eligard and Zytiga
Thanks. I asked because I am taking Orgovyx. I started taking Orgovyx daily in Oct 2024 when my PSA was 5.5 and after 6 months my PSA was .1 and I was not taking any other drug. I had prostatectomy in 2014 and I had opted for surveillance until my PSA was 5.5 last year that’s when I accepted to get hormone therapy (ADT) and choose Orgovyx instead of Lupron injection as suggested by my Hematologist. I did some research that Orgovyx is better.( Well my take. ) I am now taking one tablet of Orgovyx instead of one everyday even not proposed by my Hematologist, and will have PSA checked this July to see if my PSA stay low or undetectable.
If anxiety is an issue right now, ask the doc if you could get some Zoloft or other SSRI. I think it is a common issue with a cancer diagnosis. Peace and all good to you..,
100% anxiety goes with PC , especially if you have a family history ( like me ) ....but im not sure he SSRI or Zoloft is the answer . If he keeps active , goes hiking , keeps busy the anxiety wont get him so much . Also SSRI have a horrible safety profile with all sorts of suicides and many other things . I would recommend Ativan or Clonazapam to get him over the real bad days instead maybe . Im not a Dr but I do know about anxiety - my father passed away with PC when he was 67 . About 25 years ago . I was his care giver right up to the end . Terrible death from PC .... So when I was diagnosed with it I freaked out ! Now I am a lot better . I hike almost everyday with Dogs in mountains 8-15km per hike . I do swimming and Suana's and a bit of the weight room too ! 5 years ago Operation for 3+4 Gleason , PSA was 4.1 back then prior to surgery . Then EBRT 2 years ago when PSA slowly climbed to 0.14 PSA , Then I got 22 sessions and no ADT . Now PSA stands at about 0.04-0.031 . Very low numbers . The Victoria Cancer Hospital and my Radiation oncologist released me ( discharged me ) and just said to report to my Urologist. Urologist said to get PSA test every 6 months now . I said every 3 months and he was fine with that. Anyway Anxiety goes with PC , for sure ...your 100% right there !