He had PSMA before surgery and two lymph nodes lit up so we knew about those and the surgeon removed those and also found another cancerous node in the bilateral dissection. We finally got the insurance company to cover a new PSMA PET and that is scheduled to happen in a little over a week. In the meanwhile he just began the Orgovyx. Also has been referred to a radiologist. We are under the care of UCLA Urology Oncology and they are great. Oncologist said start the Orgovyx now to stop any activity and we’ll get a more specific treatment plan after the PSMA PET. He referred to radiology to get things going. I’m sick with worry.
@ma740988 how long did it take to receive the Orgovyx? Think it will be prescribed to husband when we meet with MO Wednesday at Mayo. He had prostate removed 2014, all good until 2024 when psa detected and increased to .24, 33 treatments of salvage radiation, fall 2025. 1st after that undetectable, 6 months later .11, the .13. PSMA PET clear, So…planning on ADT.
@ma740988 He had a PSMA prior to the prostatectomy which lit up prostate and some lymph nodes. His PSA was persistent rising steadily after the prostatectomy so he was started on Orgovyx. He had a second PSMA about two weeks after the start of the Orgovyx. The second one still showed some lymph nodes but some had lost a bit of SUV. So yes, he did have a second PSMA after being on Orgovyx for two weeks. I believe you are correct in holding off on it until after your PSMA because it works fast! After six months on Orgovyx his PSA is now .04. Doc says scan won’t show anything now.
For me, prostatectomy Aug 2025. PSA at 3 months 1.7, them 1.9 then 2.6 in Jan 2026. Started Orgovyx 2/9/26. PSA on 3/5/26 was .13
Still waiting to hear back but the plan is still 39 weeks of radiation next. They said the drop was drastic, and good but waiting to hear back from Doc about going forward.
For me, prostatectomy Aug 2025. PSA at 3 months 1.7, them 1.9 then 2.6 in Jan 2026. Started Orgovyx 2/9/26. PSA on 3/5/26 was .13
Still waiting to hear back but the plan is still 39 weeks of radiation next. They said the drop was drastic, and good but waiting to hear back from Doc about going forward.
@mcnite
You must have a pretty serious case. They don’t do radiation after a prostatectomy unless there is a very serious case.
Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive and require radiation after the prostatectomy.
What was your Gleason score? Have you had a decipher test? What does the PSMA PET scan show? It sounds like there wasn’t spread, but that you had one of those aggressive conditions.
If you can answer these questions, maybe we can give you some more possibilities about your case.
@mcnite
You must have a pretty serious case. They don’t do radiation after a prostatectomy unless there is a very serious case.
Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive and require radiation after the prostatectomy.
What was your Gleason score? Have you had a decipher test? What does the PSMA PET scan show? It sounds like there wasn’t spread, but that you had one of those aggressive conditions.
If you can answer these questions, maybe we can give you some more possibilities about your case.
@jeffmarc they said Gleason 2. The urologist surgeon did 15 biopsies, 11 positive. He was “confident” and said they also removed a lymph node (or maybe 2 I’m not sure). We did the PSA 3 months later and showed 1.7, two weeks after that 1.9 so he ordered a pet scan. It lit up in the prostate area so he referred
Me to the radiation oncologist and the medial
Oncologist. I don’t recall
any of your second paragraph wording but I was a little
Overwhelmed at the time too. The surgeon said it could
have gotten outside the prostate and one of the docs made reference to stage 3 which I don’t like the sound of. However, whether it’s just to keep me upbeat or what - the medical and radiation docs were both talking about not planning for the short term but planning for 10 -
20 years out which was a good sign. They did say I would be on Orgovyx 3 years and another pill after radiation. Even with a Medicare supplement it’s about $700 every three months so there are a lot of ups and downs besides the diagnosis.
@jeffmarc they said Gleason 2. The urologist surgeon did 15 biopsies, 11 positive. He was “confident” and said they also removed a lymph node (or maybe 2 I’m not sure). We did the PSA 3 months later and showed 1.7, two weeks after that 1.9 so he ordered a pet scan. It lit up in the prostate area so he referred
Me to the radiation oncologist and the medial
Oncologist. I don’t recall
any of your second paragraph wording but I was a little
Overwhelmed at the time too. The surgeon said it could
have gotten outside the prostate and one of the docs made reference to stage 3 which I don’t like the sound of. However, whether it’s just to keep me upbeat or what - the medical and radiation docs were both talking about not planning for the short term but planning for 10 -
20 years out which was a good sign. They did say I would be on Orgovyx 3 years and another pill after radiation. Even with a Medicare supplement it’s about $700 every three months so there are a lot of ups and downs besides the diagnosis.
Connect
Connect
Like
Helpful
Hug
@ucla2025
Just clarifying here. Did I read you started Orgovyx before PSMA-PET scan?
My biopsy came back as 3+4 right lateral and right mid. My urologist recommended a PSMA-PET but advised I start Orgovyx.
Orgovyx arrived today and PSMA-PET is scheduled for March 13th so I’m holding off on Orgovyx until after PSMA-PET.
Not sure if this approach makes sense but I’ve seen some commentary in the chats about starting Orgovyx after PSMA-PET
-
Like -
Helpful -
Hug
2 Reactions@ma740988 how long did it take to receive the Orgovyx? Think it will be prescribed to husband when we meet with MO Wednesday at Mayo. He had prostate removed 2014, all good until 2024 when psa detected and increased to .24, 33 treatments of salvage radiation, fall 2025. 1st after that undetectable, 6 months later .11, the .13. PSMA PET clear, So…planning on ADT.
@ma740988 He had a PSMA prior to the prostatectomy which lit up prostate and some lymph nodes. His PSA was persistent rising steadily after the prostatectomy so he was started on Orgovyx. He had a second PSMA about two weeks after the start of the Orgovyx. The second one still showed some lymph nodes but some had lost a bit of SUV. So yes, he did have a second PSMA after being on Orgovyx for two weeks. I believe you are correct in holding off on it until after your PSMA because it works fast! After six months on Orgovyx his PSA is now .04. Doc says scan won’t show anything now.
@ma740988
Alex quickly reduces your PSA, Which makes the PSMA PET scan, unable to see things. Much better to have a high PSA when doing it
@ma740988 His PSA was 4.7 when he had the second PSA.
For me, prostatectomy Aug 2025. PSA at 3 months 1.7, them 1.9 then 2.6 in Jan 2026. Started Orgovyx 2/9/26. PSA on 3/5/26 was .13
Still waiting to hear back but the plan is still 39 weeks of radiation next. They said the drop was drastic, and good but waiting to hear back from Doc about going forward.
@mcnite
You must have a pretty serious case. They don’t do radiation after a prostatectomy unless there is a very serious case.
Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive and require radiation after the prostatectomy.
What was your Gleason score? Have you had a decipher test? What does the PSMA PET scan show? It sounds like there wasn’t spread, but that you had one of those aggressive conditions.
If you can answer these questions, maybe we can give you some more possibilities about your case.
@jeffmarc they said Gleason 2. The urologist surgeon did 15 biopsies, 11 positive. He was “confident” and said they also removed a lymph node (or maybe 2 I’m not sure). We did the PSA 3 months later and showed 1.7, two weeks after that 1.9 so he ordered a pet scan. It lit up in the prostate area so he referred
Me to the radiation oncologist and the medial
Oncologist. I don’t recall
any of your second paragraph wording but I was a little
Overwhelmed at the time too. The surgeon said it could
have gotten outside the prostate and one of the docs made reference to stage 3 which I don’t like the sound of. However, whether it’s just to keep me upbeat or what - the medical and radiation docs were both talking about not planning for the short term but planning for 10 -
20 years out which was a good sign. They did say I would be on Orgovyx 3 years and another pill after radiation. Even with a Medicare supplement it’s about $700 every three months so there are a lot of ups and downs besides the diagnosis.
@mcnite
"Even with a Medicare supplement it’s about $700 every three months so there are a lot of ups and downs besides the diagnosis."
Maximum payout for Medicare drugs in 2026 is $2,100. That's the most you'll pay for the year. Best wishes with your treatment.
I had a significant PSA reduction within 3 months which was the first lab after beginning Orgovyx. (I’m also taking 1/2 dose of Nubeqa).