ADT, maybe not? Anyone opted out of ADT?

I was diagnosed last October PC Stage 4. We started 6 rounds of chemo in November as well as Orgovyx and Nubeqa. The chemo was finished in March but the 2 oral meds have continued. I was having awful side effects, pretty much still am. However, l switched the Orgovyx from taking in the morning to taking it at bedtime. There was about a 20% decrease in side effects.
I did ask the oncologist how long l had to take these 2 meds and his response was indefinitely for now. BTW, the lesions are in my bones at 4 places.

After the biopsy, I elected to not go on ADT. The biopsy showed prostate isolated, 4+3 Gleason, no cribriform noticed. I have a difficult time reading some of these posts. I’m retired Medical, 72 when diagnosed. As a FP, my knowledge of PCa was limited. BPH was common and would order many blood tests for PSA levels and PSA specific blood tests. Then it was a referral to a Urologist. I had my biopsy, transperineal approach (would highly recommend). Then I got to work understanding everything I could about PCa and treatments, side effects, QOL, and survival rates. I consulted colleagues and found the correct Medical Center to preform my elected procedure. I was now a patient. I had also moved across country. When a doctor mentioned, Standard of Care, and that is what they would do…I said thanks and left the office. Medicine has changed dramatically. With the advent of the internet and AI patients can now research their condition and formulate their OWN decision! I get it. You’re putting your trust with someone that spent 12-14 years learning their specialty. They are the experts. Most cases, newer doctors embrace patients becoming their own advocates. Those that are 50 and older, not so much. To get back to your question; please put in the research. Find a Center of Excellence that preforms many of the procedure you want, and will support your decision. For the many that blindly accept what the specialist recommends, I wish you good outcomes. For those that take ADT for 24 months or longer, for PCa that might give you a 4-5% extra survival rate, please determine if your Quality of Life is worth going through the major changes and side effects. Oh, it also took me 7 months of research after the diagnosis to make my decision. Don’t think you need to jump into a treatment asap. After you see a urologist, your next visit should be a radiation oncologist. And better yet, a local major medical center that has a specific prostate cancer center.

All these posts have been helpful! I have decided do stop orgovyx after my radiation of 33 days ends as I want as much quality of life as possible. I turn 81 this year. I have had a wonderful life. I can still swim 1500 yards three times a week and I weight lift and hike and bike the other three. I value being active and I play golf, though poorly, three times a week. I feel blessed for the life I have been given. I really want to throw all my pills away! But will continue with the plan, doing what I can to balance treating the disease with an outlook of maintaining a quality of life worth living until my Maker calls me, Thanks to all of you for sharing your thoughts! Jim

@cbball

I’m sorry. I should tell you the procedure I elected to have. First, I determined that UVA was the closest COE to me (about 90 minute drive). I saw the top oncologist that did the procedure I wanted. In February I had HDRbrachytherapy, 17 cores inserted and a specific amount Iridium 192 applied. Long procedure lasting about 3 hours. Mild discomfort (pulled foley out next day…no problem). The prostate specific oncologist preforms over 30 of these a week! They did suggest that I might consider taking pill form Orgovyx for a couple months prior to the brachytherapy, but I elected not to. They were fine with that. I had an additional 25 session EBRT boost at local hospital. Slight discomfort in uination for a couple of weeks. No ED issues. Radiation caused some fatigue and headaches, but manageable. Urinary flow came back. Waiting 2 weeks to see a Urologist to see where my PSA is and probably a PSMA Pet Scan. Decipher said I was intermediate to high risk, but the prostate Center mentioned that they have preformed many procedures with higher risks than mine and those patients are doing very well (many not taking ADT). A local community hospital might have an oncologist that still does HDRbrachytherapy, but rarely more than 8-10/month. You need the expertise of oncologists that does this procedure all the time. This is a personal choice with help and guidance from competent specialists that have an open mind rather than black and white directives from standard of care. There are many new FDA approved procedures that have come out in the last 7 years. Some will look at those with an open mind. Many will not even consider them because they have no long-term data. Study all and remember it’s your body and it needs you as an interested ADVOCATE. Good luck!

I am also contemplating stopping ADT. I began Orgovyx 7 months ago and Abiraterone 5 months ago. I had Brachytherapy in February of 2026 with 20 some needle injections followed by 5 external radiation treatments.
My most recent PSA test was .09.

I was diagnosed in 2025 with a PSA of 70 (yes 70) and a Gleeson of 8, 4+4. My doctor told me I had a 90% chance that my cancer had already spread. After the PET scan, it was determined the cancer was contained to the prostate and possibly in some of the surrounding fatty tissue, but that was not a factor. My doctor considered my cancer high risk because of the numbers.

The side effects are reducing my quality of life. I have no libido, irritable, and depressed. The worst side effect that started after the ADT are painful bowel movements with pelvic muscle spasms followed by hours of painful burning. The doctor said he has not heard of this before. I had a colonoscopy which did not show anything and my colon is fine. From what I can find, the hormonal change causes the skin to dry out and become less elastic. This leads to irritation, burning, and the pelvic muscle spasms.

My wife is 100% on board with me on stopping the medications. I am 65, physically active, and still work 60+ hours a week. I have not experienced any fatigue or muscle loss, and night sweats are minimal. The doctor has lowered my treatment time from 2 years to 18 months for the medications. I want to stop now or at the very least stop after 9 months.

I guess everyone's situation IS different.

@brewbeer
Abiraterone can really make things difficult. It would take your testosterone down even lower and make your side effects even worse. Switching that drug to another one could make a major difference. I did that, I know many other people that also did it.

Rather than stopping everything and taking the chance that your cancer could come back soon, you should consider another option.

For starters switch from abiraterone to Nubeqa (Darolutamide). It has no side effects for most people And could possibly allow you to continue with the ADT.

If the ADT was still too much, you could stop that and just be Nubeqa. I know a lot of people that are doing it, and it keeps their PSA down to undetectable without ADT since it suppresses the ability of testosterone to work with your cancer.

I am on Orgovyx And Nubeqa and have very few side effects, All due to Orgovyx. I stopped Orgovyx For eight months and my PSA still stayed undetectable.

I know a lot of people using it as their only drug and it works really well for them.

Talk to your doctor about these options. This would allow you to at least be on a drug for a reasonable amount of time, 18 months to two years, without the annoying side effects.

@cbball
67 Y.O, I've been through the ringer...Started at Stage 3 Gleason 7/8. 'Went through the SOP...radiation, ADT...then progressed to stage IV with metastasis. 'Did the Chemotherapy (Taxotere) for the SOP 5 months. The cancer was in "remission" for about 1-1/2 years and now is back, so I've taken 2 treatments of Pluvicto. The PSAs are coming down now,
but (to answer your ADT question), I've had problems throughout the last 5 years with the CV issues...side effects...of ADT. I started on Eligard and switched to Firmagon after severe CV issues (narrowly avoiding heart failure and a major stroke). I have suspended ADT several times over the course of my affliction, simply because I know when my body is overloaded. I know that's the overall point to treatment, but not if the treatment kills me. My Oncologist simply responds with "okay"(!~!)
Whilst on Pluvicto, I have suspended the Firmagon...the combination is too much.

You raised many good points...Much more research is available than ever before. Thankfully I have a very strong medical background, so I can make sense of the info, but I encourage EVERYONE to talk to your Oncologist about everything you discover!!...Some Doctors either don't know or don't care to share what they know. Ultimately, the treatment decisions are the patient's...and ALL information is necessary to make the right decision.

Prayers for all afflicted!

@brewbeer Any bleeding? There are no pain nerves in the rectum, so any burning is probably from the anus. Have you tried to use laxatives, stool softeners, etc. Sounds a lot like what occurs with a fissure or external hemorrhoids. That can induce anal muscle spasms.

The no libido is the ADT. How was it the first 2 months? As Jeff mentioned the abiraterone is hard as is the prednisone that you have to take with it.

@deccakid
I’m sorry to hear about your issues with ADT. You’re very lucky your CV SE’s didn’t make the PCa irrelevant. You probably have, but if you’re just seeing a local oncologist, please find a COE prostate oncologist with a prostate cancer Center. There are many doing trials with new drugs and treatments that need volunteers.

Good Luck

@cbball
Thanks, it happens...not just to me according to other data...
Unfortunately, I'm in a relatively small town with a local Cancer Center, but have to go to a larger town for the Pluvicto....also, no car, no money and no energy...I have to take my chances, because chances they are, with the Pluvicto series...The PSAs are falling, and I hope to get a scan after 4 treatments, and if PSA is negligible, then perhaps I can forego the last 2 Pluvicto treatments...
We'll see...
Best regards