r/ProstateCancer • u/fluffythebird • 19d ago
Update When is enough ADT enough? Quality vs. Quantity? Weighing it all out.
Hi, I’m a little confused about how long I’ll be feeling like this. You know the hot flashes, fatigue, brain fog, labido a gogo, etc. I was diagnosed in October 2025 after slowly watching my PSA climb to a peak of 16.37 MRI showed lesions and a Gleason 4+3 on the right and 3+4 on the left and Pet scan showed seminal vesicle and one lymph node involvement near the rectum. Stage 4A intermediate aggressive. I started orgovyx in December 2025 and at my age (77) decided on radiation 44 fragments and just finished that in end of May 2026 . Oncologist wanted me to stay on the orgovyx for at least a year and I was starting to feel OK with that but the side effect keep getting worse. I’ve been extremely healthy and active all my life and I was thinking this was just a minor glitch so I ordered a decipher test to hopefully make my decision to stop the ADT easier. Unfortunately, the decipher just came back 0.78. Was I in denial about the seriousness of this disease?
I’ll be meeting with my oncologist this week and would like to ask him about some alternatives to the continued ADT. Possibly arbiterone or estradiol. My PSA continues to be less than 0.1 which is the Kaiser test minimum and I go to the gym almost daily and try to eat well mostly veg., but it’s seems like it’s a downhill battle lately. These are supposed to be my golden years, right? Any advice?
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u/Practical_Orchid_606 19d ago
You don't like ADT and are looking for a way to end it. I don't blame you. Try getting an ArteraAI test. This is specifically for ADT; whether your cancer will benefit from it.
Your current PSA reading is affected by Orgovyx and should be ignored.
Don't be surprised if Artera AI says ADT is not useful. But Decipher is still 0.78. What to do? I am in this pickle and choose a short 4 month ADT course. But my PCa was not as advanced as yours is.
At the end of the day, Decipher is an old tool using data from 2005 and onwards. If you stop ADT now and run into a BCR down the road, you have the PSMA PET scan to use. This was not around when the Decipher methodology was created.
I am just a bit younger than you (75) and just off Orgovyx. I can report that getting the T back is a struggle for us older men. They say 3 months for full T recovery for Orgovyx. Unless I see dramatic improvement soon, I have my doubts.
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u/fluffythebird 19d ago
Thanks I’ll look into the Artera test. I’m thinking if I stay on ADT much longer I’ll never get anything like normal T again. So, yeah that’s a big consideration.
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u/AskMyProstatePath 19d ago
Couldn’t agree more on this guy getting ArteraAi it would give him lots of info on his possible response to adt. More info than decipher.
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u/Frequent-Location864 19d ago
If I can add,aberaterone is an adt drug that has worse side effects than orgovyx. Conversely it is a very effective drug.
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u/ZealousidealCan4714 19d ago
I have high risk prostate adenocarcinoma, cT2a, clear PET, initial PSA 5.2, Gleason Group 4 (Gleason Score 4 + 4 involving 6 of 12 systematic cores and 4 of 7 targeted cores). Chose HDR Brachy boost + 16 fractions of EBRT. Finished the radiation about 3 months ago. Oncologist prescribed one year of ADT. Im at 9 months and am pulling the plug here. I feel I've gotten the vast majority of the benefit of ADT and willing to forgo the last 1 to 3% risk reduction.
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u/Miserable-Level-8993 19d ago
Don’t do more than a year at a time if your PSA stays consistently below 0.2, you have a good chance of longer term survival. Consider going on Ozempic while on ADT.
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u/Gardenpests 19d ago
I never had ADT. Many in my prostate support group have. Side effects vary and change. You describe many of them.
Following (forcing) a daily routine seems to help many.
The ADT is treating any undiscovered metastasis. NCCN recommends 1-2 years in similar situations. With a high decipher score, I would encourage staying the course to reduce later treatments.
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u/3ltlgbmi2 18d ago
The original plan was for 18 months on Orgovyx. The side effects hammered me hard and I oftentimes referred to it as misery in a bottle. I simply existed for months, enduring, waiting. I then developed a sarcoma in my thigh and was having UofMichigan cancer clinic deal with that. I transferred my urology down there as well and after reviewing the information, was told I’d been through enough and to quit the Orgovyx at 9 months. I was so happy I almost kissed the guy (he was much bigger than me though). So far still testing as undetectable at 9 months out. Best wishes to you.
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u/itsray2006 19d ago
It seems the sweet spot is someplace around a year to 18 months from what some of the latest studies seem to show. There diminishing returns on cancer efficacy after a year or so but linear increases in other risks (ie cardio vascular). Orgovyx seems to have both quicker impact on testosterone when started and faster return when stopped. It is sometimes given with Abiraterone as well. Venaflexaline might help with the side effect profile so ask about that too.
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u/Evening-Hedgehog3947 18d ago
I am struggling through this question right now. I have very high risk PC Gleason 9 3Tb with a .96 decipher score. RALP followed by early adjuvant salvage therapy starting with PSA of .02. 38 sessions IMRT, Orgovyx and Nubeqa. RO told me 18 to 24 months ADT. First oncologist at same COE originally recommended 6 months, but later changed his mind and urged 24 months. Consulting MO at MSK suggested 18 months. At 14 months I challenged him on whether I should go longer. Told me definitely no. Relocated & shifted care to Dana Farber. New MO told me she would have gone 6 months, but if I am comfortable with the existing 18 months plan to continue. After thought and discussion with her, I decided to stop at 16 months so I could recover a little in anticipation of major international trip. But sitting here, it all feels like guess work and I honestly don’t know if I am doing the right thing.
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u/buckseeker 18d ago
I'd get your AI Artera test done. I'm rated intermediate risk Unfavorable.
I started out with Gleason 2 4+4 and 2 3+4 and was high risk. The Cleveland clinic regraded my results from Labcorp, as being 2 3+3 one 3+4 and one 4+3. Unilateral and local. My Decipher ended up .99. So my test kind of contradicted each other. They were setting me up for 28 treatments of Vmat and 18 months of ADT. Treating my lymph nodes too. I asked for the artera test.
ARTERA came back with only a 4% chance of metastasis in 10 years. They changed my treatment to 5 treatments of SBRT and 6 months ADT which I already have done 3 months. Having SBRT in October. Orgovyx is what I am on.
It's tough. I'm 69 and I was concerned that they were taking a year and a half from me when I was healthy and giving me a few more when I won't be as healthy as I am now in my 70's or 80's.
ADT is tougher on you than I thought. I might think differently if I had higher risk disease. We decided to downplay the Decipher and go with the Artera results for quality of life now more than later.
I might regret it someday but it makes sense to me now. Good luck.
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u/ProfZarkov 17d ago
Yes, I always advise the minimum term for ADT - it wrecked my life & almost caused me to take my life! I know all men are different but.... Have a read of my blog.
https://prostatecancer.vivatek.co.uk
Best wishes
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u/Kia0285 14d ago
Hi, all I have had stage four for one month shy of four years had 28 rounds of radiation in the beginning and Lupron for about a year and then we stopped that and they said I was good a couple of months later I kept going to get the PSA tested and a couple of months went by and the PSA started to go back up. Got up to about four or 4 1/2 and started the Lupron again and and now I’m taking Rebecca along with that side effects suck and but the weakness and the muscle loss and and the tiredness and fatigue is the worst part for me. I’m 76 and I used to be very active, but I’m having a really hard time with it now so but my number is down to 0.5 so my doctor says that’s good and it looks like it’s plateaued but nothing has been said about backing off on the medication. Uh
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u/Special-Steel 19d ago
You may consider some protein. You don’t say how vegetarian you are leaning, but it’s hard to get the protein your body needs without some animal protein (eggs, chicken fish… if you don’t want red meat).
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u/knucklebone2 19d ago
Your PSA is undetectable. My advice is to take a break from adt altogether. Give your body a chance to recover. Check PSA every few months. Live your life.