Gleason 9 SO wants me to stop ADT @6 Mos for look see

I don't want to give medical advice, but I am Gleason 9 and after radiation I had 3 years of Lupron. Urologist decided, and I agreed, to take a short vacation from it. Immediately my PSA started creeping up, from less than 0.1 to 2 in less than a year. Every time I saw him he said not to panic yet, we'll see what it does, etc. Finally he put me back on Lupron after a year.

The PSA is still creeping up, now 2.1 I've fired my urologist and I'll be getting HDR brachy at Mayo next month. I hope it's not too late.

You can do whatever you like with ADT, But you have to realize that a lot of research has going into how long ADT should be given to somebody with Gleason nine. The answer is at least 18 months. Yes, you can do 6 months, But you will probably see a reoccurrence sooner rather than later. As mentioned in the other reply to you, The person stopped ADT and found their PSA rising. When they went back on it their PSA would not go back down to undetectable. The thing is you’re inviting metastasis to grow by limiting amount at the time you take ADT.

Couple of months ago at an ancan.org meeting Two of the participants with Gleason nine had both taken vacations from ADT And we’re now living with multiple Metastasis in their body. This leaves them with chemo or Pluvicto As the usual treatments from multiple Metastasis. These guys were not happy.

I was on ADT for eight years. It kept my testosterone and PSA under control. The only reason I stopped ADT was because I’ve been on it so long my testosterone is unlikely to ever come back. I do take Darolutamide and it is keeping my PSA undetectable.

I'm over 3½ years into ADT and Apalutamide. I'm not stopping until there's a credible body of evidence that it's safe to take a hormone-therapy holiday with advanced PCa (there's not), or until it's causing side-effects that are a bigger risk than the cancer itself (it isn't).

As @jeffmarc hinted, having undetectable PSA this long is a huge piece of luck, and I have no intention of rolling the dice and maybe having it come back castrate-resistant.

I hope it isn't too late for your either. Best wishes my warrior friend. I have seen some posts pointing to new studies that this forum led me to that state 18 months minimum on ADT. I investigated them and that is the reason that I will show up next week at a Comprehensive Cancer Center research hospital for a second opinion. Sadly, not Mayo, but a well-respected NIC center. I have 3 months to make arraignments and decisions and will be on Medicare by then which opens up even more options. As I said this was proposed 2 days ago and currently not buying in. Early 70's and view it as time to take care of me. Otherwise very healthy and active and open to the best treatment. Thank you for your feedback.

Thank you for your reply. My Urologist is considering this, not me. I had lost some confidence in him and made an appointment with our local Comprehensive Cancer Center for a second opinion a couple of weeks ago. Stampede study and NCCN protocol point to minimum 18 months so his 6 months fell short and confirmed my decision to seek another doctor. I have found this group's experience very helpful and full of rich resources. No one here told me what to do but pointed towards the places where the current research is and shared from their personal experiences which I respect. Eternally grateful.

"and will be on Medicare by then which opens up even more options. "

Yes, yes, and yes! For me, Medicare is a magic key that opens many doors. If you're in the U.S. and you don't have Medicare yet, hurry up and turn 65 as soon as you can.

Yep, live in the good ole US of A in the mid-Atlantic region.

I am Gleason 9. Dr. SCHOLZ of PCRI, My Oncologist and Radiation Oncologist at UCLA said one year on Orgovyx is enough if PSA is undetectable and cancer is confined to the gland.

Sometimes the beginning treatments work but you will never know unless you get off adt.

Chip, as North said, if you have no serious impacts from ADT so far, why go off ?
I would get bloodwork ( lipids, metabolic, etc) done every 3-4 months just to be sure you are in good shape. The only reason to do less than the recommended 18 mos. would be an “event” - hate that word cause it sounds like a good thing - which calls for cessation of ADT. Best
Phil