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I just saw him. I am Gleason 9(4+5) and Decipher score is 0.8 and Pet scan show no metastases. After SBRT at UCLA, I finished 8 months of ORGOVYX. My PSA about 6 weeks ag was 0.06.
He recommended I should stop taking Orgovyx now or after may be one more month. Taking longer than that, I get very little benefit. I am tolerating ORGOVYX well. But my biomarkers are changing somewhat. No muscle loss or increased fat mass. I work out 6 days a week with 3 days in GYM.
I will go along with his recommendation and stop ORGOVYX after December 31st. Of course, I will consult with my oncologist at UCI. My Radiation Oncologist Dr Kishan already told me I can stop Orgovyx after 6 months and monitor PSA.
Replies to "I just saw him. I am Gleason 9(4+5) and Decipher score is 0.8 and Pet scan..."
That’s impressive that you’ve had no loss of muscle mass or increased fat mass! I aspire to that. I have a localized Gleason 8 PSMA Pet negative and close to choosing between RP + ADT vs IMRT+Brachy+ ADT. Initially my radiation oncologist Dr. Sayed (Memorial Care) said he was on the fence whether he’d recommend ADT since he wasn’t sure if get much benefit. I’ve just recently learned about the Decipher test and am in the process of ordering it. Did you start out with Lupron? This is what he’s suggesting now. He changed his mind and thinks I should do 1 Lupron shot 5 weeks prior to radiation then another 3 months post radiation perhaps with Orgovxy.
I’m concerned about long term ADT and my workload (consulting) as well as all the other side effects. Any insights are appreciated.
My other option is RARP using the Davinci single port with Dr. Moses Kim at Orange County Urology with 6 months ADT.
I’m leaning towards surgery because I already cystitis and chronic bladder and urinary pain with concerns about potential secondary cancers or tissue damage. I’m 60 and single.
Again any insights are appreciated.
Thank you
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Should I have a separate oncologist besides a radiation oncologist? I am also seeing Dr. Kishan. I am also a Gleeson nine with rapidly increasing PSA (doubling every 2 to 3 months) but still low. The PSA pet scan showed nothing and I am being told to wait another three months for another PSMA. Who should I be seeing for a confirming opinion?