Radiation + ADT

@texan1961
My circumstances are very similar to yours. I have 6 tumors. Two are gleason 7 (3+4) with cribriform four are gleason 6 (3+3). Age 63 diagnosed, now 64. Decipher = .72.

My surgeon/oncologist is Dr. Joseph Wagner - Tallwood Health Hartford - renowned robotic surgeon (over 4k) and one of the earliest to specialize in the procedure. I fully expected to have a robotic removal recommended. However, he advised me that my situation was 'equipoise - surgery vs. SBRT (with adt/orgovyx). This was confirmed in second opinions with Smilo (Yale) and MSK. Wagner was very direct -- one treatment was the same as the other. Both are curative in intent and there are no guarantees (cribriform is an issue). In consultation with Dr. Wagner and his colleague Dr. Byun (radiologist trained at MSK/Weil Cornell) I opted for radiation.

My decipher score (high) provided Dr. Wagner absolutely necessary information to help guide his recommendation. In consultation with Wagner & Byun I opted for SBRT (5 sessions vs. the longer version) and am currently in the final 6 weeks of Orgovyx. I am at about 70% of activity with some mild SBRT/orgovyx side effects (voice is hoarse, fatigue, and some muscle and bone aches) - all tolerable with occasional Advil.

I have tachycardia and have only experience one mild episode early on with Orgovyx. I walk a lot, ski, (winter here in New England), and am back to normal functions for the most part (last SBRT was 4 weeks ago). Orgovyx is expensive. It was my physicians first choice and I followed that recommendation.

My advice (gleaming lots of good advice from contributors on this site - especially Jeff M. and Heavy Phil and others) - ask specific & pointed questions of your provider, get a second opinion, stay active. Importantly: find doctors that you Know Are Great. Happy to answer any questions. Keep going - this will work out.

I'm on ADT now for a month now. Orgovyx and Nubeqa. I know it's a bit early to share my own personal experience but so far, the side effects are not that big of a deal.

Hot-n-cold = yes
Mild fatigue = yes
Mild GI issues = yes
Low quality sleep = yes (but this comes from the hot-n-cold issue)
Sex with my wife once per week = yes
Urination is stronger with fewer stops and starts. (in less than one month!)

Things that make my side effects worse.
Not exercising. Poor eating choices, Alcohol. Stress.

Diagnosed in November. Stage 4, Advanced.
Gleason 10 in all sections with local metastases to lymph nodes
50 yrs old. Fit, 185 6'. Exercise an hour a day + super regimented diet.
No other co-morbidities.

My case was very similar to yours.

67 years old
PSA 7.1
Clean MRI
2 positive biopsy cores
3+4 and 4+3
Treated at leading SE university

Opted for three pronged approach with 6 months Orgovyx ADT+ 25 daily IMRT treatments + one HDR brachytherapy procedure as “boost”

No hot flashes, minimal weight gain, sore intermittent fatigue on ADT. Now 9 months post treatment…PSA .1 and everything back to normal- Feel like I did before diagnosis

I wanted no part of surgery and feel I got a great treatment plan

@texan1961
In my case my decipher score (genetic test) put me at a low risk. If, I was at an intermediate risk ADT would have been prescribed. If you have not had a genetic test on your biopsy samples I would ask about this. I am currently over 2 1/2 years post treatment with no side affects and my follow up PSA tests look good.

@jonathanack Best of luck!🤞

Regarding ADT. I had similar concerns . Now, there is no getting around it, ADT isn't fun. BUT, it was nowhere near as bad I thought it would be. There is research showing that resistance training negates some of the effects of ADT. Sounds like that would be right in your wheelhouse! It worked for me.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9997646/
I was give Orgovyx. The big upside of that is the testosterone comes back to normal in a much shorter time. The radiation vs surgery decision is always tough . I opted for surgery back in 2020. The two biggest reasons: 1) I would have to do ADT for 18 months. Back then there was no orgovyx so the revovery would have been at least 6 months. 2) If surgery didn't work, there was plan b. Radition +ADT. and this happened. The plan B on radiation is basically indefinite ADT. Hope this helps, and good luck!

If you are on ADT it adds to the fatigue. I am on ADT and Nubeqa. I am getting 20 radiation cycles to the prostate and I am more tired than usual new normal tired.

I should add. I got my libido and energy back, in ~ 6 weeks, but it's 70 year old energy and 70 year old libido. LOL

@toolbelt and to michaelcharles, thanks for that discussion. I'm starting on Orgovyx next week, then 28 days of IMRT the following week. After doing Antera AI testing I thought I was in the clear for no ADT. I had multiple consultations where I always asked the docs if they trusted the AI part of AnterraAI, and all said sure, why not. The RT Team I decided to go with said they didn't trust just AnteraAI alone and wanted to add Decipher testing just to make sure. It was a shock to me that Decipher pointed out I have a more aggressive form of Pc than my staging indicted and thus the last minute added need for ADT. Quick research, and the shared experiences of this discussion board, have moved me to choose Ogovyx over Lupron injections. For all the same reasons that you have stated. Reportedly fewer or at least less intense side effects, knowing that I can stop that treatment if it is overwhelming, and at least the illusion that I have some daily control. In reality, I will do just as the doctor orders, the alternative is what I'm trying to avoid at all costs. Best wishes for success to you two and all the members of the club on this discussion board. Invaluable.

@jesse65 To clarify, I'm 65, PSA 5, Gleason 4+3=7. Diagnosed in October this year, negative PSMA PET. Met with some of the top institutions and considered surgery, proton, and SBRT. Almost went Proton, but talked out of it by two proton therapy providers.