One year PO and now it seems I'm Stage 4 :-(

Very sad to hear of this, but makes me glad that my urologist - who said that he never does Active Surveillance - insisted on me having the RP surgery (DaVinci robotic-assisted, single incision). He stated/argued: "you're only giving your cancer two or more years to get worse, and then deal with a tougher situation." That said, even men like me who had the RP surgery, can end up with an unexpectedly bad surgical pathology report...worse than the initial biopsy and lower 3 + 4 =7 Gleason score revealed. So...I am in a similar boat being a pT3b having had left seminal vesicle invasion (no tumor or nodule, just cells). Since it is baseball season, the analogy is that prostate cancer is like stepping into the batter's box, and all you get are curve balls, screwballs, and change ups...and then you get hit by the pitch right in the face, and so bad that you're taken out of the game with a career-ending (life-ending) injury. You were waiting for that easy-to-see, 4-seam fastball straight down the pipe to crush it out of the park to win the game, but instead "you're done." Best of luck to you...keep us posted on your journey and therapy outcomes.

@im62at2024
I like what they’re saying, but I’m wondering why you’re not getting another PSMA PET scan.

Don’t mention how high your PSA is, but if it’s over about .5 you should get a scan right now to see if there’s anything showing. That way, the RO has something to target. Your last pet scan is too old and doesn’t represent what has happened since you have had BCR.

@jeffmarc
I believe most of that was addressed in my original post up top but anyway my last PSMA PET-CT Scan was 4/15/26. My last PSA test was done 03/24/26 was 0.3. They'll be targeting my right arm humerus bone, it's in my marrow. If it doesn't get my PSA down I'm going to ask for another PSMA PET-CT Scan as someone has already mentioned if this doesn't bring my PSA back down to undetectable it's likely in my pelvic area, I'm not willing to go on "likely in". Just not sure I'm going to let them radiate my pelvic area without some proof of it being there.

@im62at2024 Unfortunately, there’s rarely ‘proof’ that it’s in the prostate bed/nodes…but it turns out that IS there 66% of the time, as evidenced by the number of successes with SRT.
Phil

@im62at2024
That PSMA pet was probably recent enough. You are right I didn’t go back to the top. I usually do go back to the top and check, but I didn’t in your case, sorry.

You definitely need to get that elbow treated as soon as possible. You don’t want to wait any longer if you can have it stopped. I know people have had to have surgery and removal of bone after that happened. Hopefully, they caught it early enough.

If your PSA doesn’t drop back that another scan is one answer. I don’t see you mentioned getting salvage radiation. That really would be essential if nothing shows up on that pet scan.

@jeffmarc
That's ok no need to apologize I'm just so very thankful you folks are here to help us.

I've not had any radiation yet my surgeon was super confident that he got it all, all the margins and everything around the prostate tested negative. My last biopsy in February 2025 showed several 3+4=7 and one 4+4=8 Gleason's I believe is correct. I will say this I want to get it out of there ASAP, kill it and hopefully stop the pain in that area it's bearable but no fun. Right now 5 sessions of SBRP is supposed to start next Wednesday pending approval. They said the cancer in the marrow is a bit more than 2cm in length and filling up all the entire 2cm area of marrow in the humerus bone. He said the outer bone structure around the affected area still looks really good or we would be looking at operating and stabilizing the bone.

I'm actually starting a two week regimen of an antibiotic today for a bad sinus infection. I contacted the cancer institute I'm using to see if it would interfere with the radiation and they have already called back and said no it'll be fine to be on the antibiotic during the treatment. They also gave me a direct number so I'll get someone immediately via phone for any questions. I left a message on a general number but someone routed to it to the correct person.

I'm in the US and on a UHC Medicare Advantage plan. My out of pocket max this year is $4200. I spent 22 years with a Class 1 railroad as a Journeyman Machinist but forced onto medical retirement by the railroad and the railroad retirement board/RRB due to Ménière's disease and a failed 3 level lumbar fusion in 2009. I'm 63 years old, normal retirement for a railroader is 30 years service and 60 years old.

@im62at2024 Ask your RO this question: if the cancer is inside the marrow, and not in the surrounding bone, how did it get there?
What did it pass thru along the way? If the prostate is point A and the marrow of the humerus Point B, shouldn’t it be assumed that it might have traveled thru the lymphatic/vascular system to get there?
You have a Great surgical pathology report - but no surgeon can see PCa cells. If it was me, I would have the SBRT to zap the lesion and ease the pain; then I would go on Orgovyx for 6 months and have SRT during that interval.
I am not trying to be a downer - or worse- thinking I know more than what your RO has forgotten! I’m just using logic in following the route this thing has taken and the fact that it’s IN the bone, not ON the bone…Best,
Phil

Hi,
In a way you’re lucky they found it on the PET scan, now they can go in and hit it with radiation. Got to agree with Phil, sounds like a mild/newer ADT drug like Orgovyx would help. Might want to mention it to your Oncologist, normally they put you on ADT before and after radiation.
Dave 3+4

@heavyphil
I got a wonderful call from the hospital network speciality pharmacy or whatever the lady called it telling me that Orgovyx would be covered for me at a $0 copay. Not sure how that happened but I'm glad it did. Something about it would have been $1000/month but it would be $0. Not sure if they ran through the Orgovyx payment plan or what.

@im62at2024 If you have commercial insurance what they did was submit the application and got approval for the Orgovyx savers program. That covers copays up to $10K per calendar year. Pharmacy puts in bin/pcn/grp that charges the copay to the pharma company. They are willing to accept what the insurance will pay. At a $0 or $10 copay you have no incentive to switch to Lupron. The kicker is that the insurer is not always notified so the copay may or may not be credited to an annual maximum.