@soli
Hi Soli ,
Final pathology was 4+5 with large cribriform and IDC. Decipher 1. Tumor burden was very small, I think just 10% of the whole gland but enough to cause havoc. He had uni-focal EPE on the area of 3+3 and inconclusive margin in area of 4. Margin was very small, 1 mm I think and burned by cauter and that is why it was inconclusive. BUT, since his recurrence is in lymph nodes, my suspicion is that cancer was already there even before RP , especially since one of the glands that is now definitely involved was faintly positive before the surgery, but was dismissed as "not positive" by UCSF doctors since SUV was small.

Since he is high risk case we had consultations with RO and MO and surgeon very soon after surgery and we were advised to wait for the first uPSA and go from there. Since uPSA came LESS than 0.014 , we were advised not to do adjuvant due to high risk of toxicity etc. , but option for adjuvant was open for us. I think that you had second opinion at UCLA and you got the same advice - to wait. Most doctors advise that because it is very small difference in results between adjuvant and early salvage.

We decided to wait but we did uPSA every month (on our own dime) to be able to catch early recurrence and act accordingly and it proved to be very smart move. My husband started having small rises every month and by March it started doubling at uPSA levels which are dismissed by many doctors - DO NOT DISMISS them ! We asked for PSMA when my husband reached about uPSA of 0.15 and since we did not want to miss that magical 0.2 for starting early salvage !!! The wait for PSMA was about 4 weeks and I sad NO WAY we will wait for that and we did PSMA in local hospital and started Orgovyx the next day.

PSMA came back positive for 4 nodes with very small SUV but obviously positive. So, it is no truth that low PSA will not show up on PSMA and also salvage starts at 0.2 regardless of if something is seen or not.

Due to high risk features my husband was advised to have whole pelvic floor and glands treated and also second ADT is added - Nubeqa. We had to insist to get Orgovyx and Nubeqa, so you have to voice your preference, otherwise it will be Lupron + Abiraterone. He will be on ADT 18- 24 mos.

I hope that I answered to all of your questions and please feel free to ask if you have additional ones.

Wishing you ZERO BCR in your future 🍀