Waiting for the Numbers...

I’m a little puzzled by what’s going on with your situation. Normally, with someone that has a Gleason eight and spread to the lymph nodes, They would do radiation IMRT and maybe even follow it up with brachytherapy.

They would put you on ADT for a month or two and then do the radiation,

Is that being planned for you in the future? If not, I would think you should visit a center of excellence and get a second opinion on what treatment you’re getting. Why aren’t they planning to do radiation? Did they find multiple (over 5) Metastasis so they Figured they would just do chemo in the future?

I’m just puzzled why they are holding off.

Jeff, thank you for your reply. Im looking over the report and see that nodes are : one thoracic node... then abdominopelvic nodes: multiple retroperitoneal nodes: precavel, preaortic, etc, 15 SUVs for 15 different nodes. One SUV for the prostate organ itself. Then a 17th SUV on a rib head that the Dr thought might not be cancer. I do remember the Dr saying "no radiation" several months ago but there was no explanation with that statement and I was glad to hear it at the time so did not ask. Im guessing (but will ask more questions next month) that I am past radiation and am looking at chemo in the future. Now I am wondering if "low volume" is an accurate assessment, it was verbal and does not appear on any report. To tell the truth, I was happy with the low T and PSA numbers today and glad to be out of there and back home in my woods with my dogs. Simple pleasures. Thanks again Jeff, this is just the kind of comment I was hoping for, I will start making a list of things to talk with the Dr in 5 weeks.

Five weeks sounds like too long to wait in view of your test results.

Your situation is interesting.
> 8(4+4); cribriform pattern; SUVmax 55

What you have is advanced PCa (due to the Gleason 8(4+4) and the SUVmax = 55); your PCa also has the potential of being aggressive (due to the cribriform pattern).

Actually, your doctor should probably be planning treatments.
> yes, additional PSA testing should continue (for the rest of your life)
> you’ve already had an MRI
> you’ve already had a PSMA PET scan

There’s no problem having more scans. But unless he’s unsure of the previous results, you have enough information to move ahead with your choice of treatments.

You do not want to do “ADT until it quits working….” That’s not treatment. That’s typically what’s done to slow down the cancer and shrink the prostate shortly before radiation treatments.

You’re not anywhere close to the point where chemo would even be discussed yet. You’re a long, long (long) way from that.

Yes, "you have cancer.” But, it’s treatable and not as dire as you think it is.

@stage4lovolmetpc What your doctor probably meant was “no radiation by itself.” What you’re probably looking at is: ADT + ARPI + radiation (maybe with a brachy boost)…. and then see how that goes. If it goes well, great; if not, then some systemic therapy.

Talk with your doctor more about this so that you understand your diagnosis better.

Thank you lag, I got the biopsy Sept 22 of 2025 and the petscan Oct 22 of 2025. Held off ADT because of $2000 out of pocket for Nov and Dec 2025 was not in my budget and the Drs said OK. Waited Jan 26 thinking about things, getting more info. Started ADT in Feb 2026, $2100 out of pocket satisfied this Feb and March. None of the Drs made me feel like I had to be in a hurry to seek treatment other than ADT, I saw all 3, RO, Uro Dr, and MO....Oct, Nov and Dec 2025. Now I just see the MO, Jan, Feb and March 2026.....looks like Ill be having a PSA and T test every month (as I have since August of 2025 when it was 66, found when I was in the ICU for DVT-UE, paradoxically, I could have died from the blood clot caused by pc, before I even knew I had pc)...well, looks like it will get another chance...lol. This is probably only funny to me....but I have to laugh...."what does not kill me makes me stronger" ....anyway, this is where I am right now....and Im going enjoy the moment even if it kills me.....OK thats enough of the bad jokes....thanks for your comment, I have read your earlier posts and you are always helpful. Im looking forward to months of ADT and maybe some chemo down the road. Let me know what you think.....

Brian, thank you, I for sure will ask more questions next month......let me ask one of the group right now...what is the criteria for having chemo vs radiation? It would seem I am eligible for chemo right now or soon...more than 5 mets, advanced and aggressive pc, Gleason 8? I have to say that I am nervous having radiation in a brick building off county rt 55A in upstate NY. The RO handed me a 3 page print out of possible SEs and said come back in 3 months. None of it lined up with what I have learned here....not impressed is putting it mildly.

@stage4lovolmetpc At some point, the question might actually be radiation + either chemo or Pluvicto (Lutetium-177); depends on how much spread, volume, etc. there is.

Plus, your cancer is hormone sensitive so, Pluvicto might be the first option they choose (after radiation). Lots of questions to ask (& answer) before a decision is made.

@stage4lovolmetpc
If you have more than five metastasis, they usually don’t want to do radiation. I know somebody that had 15 and had multiple radiation sessions. That’s not the standard. The doctors usually want to do chemo if there’s a lot of metastasis.. These days they could also do Pluvicto Before chemo, It has fewer side effects, it is very effective for 1/3 people and somewhat effective for 1/3 of people, It doesn’t work at all for 1/3.

As Bryan says I do not understand why you are not being set up for treatment. The drugs are meant to work when you don’t have as much metastasis. Yes, it will shrink them and stop them from growing, but it is not as effective as the actual treatments.

You say you’re seeing an MO. You have to realize that there’s a big difference in MO’s. There are the generic ones that treat all different types of cancer and don’t specialize in any. They don’t keep up with the latest things going on, and you really can’t trust them to make judgments for an advanced case like you have. You need to see a Genito urinary oncologist, The ones that specialize in prostate cancer and keep up with what’s going on In the latest treatments.

I have asked Rick at ancan.org For a recommendation of a GU oncologist somewhere near you that could give you better direction, And help you make decisions that can keep you living for a long time. Prostate cancer is a chronic disease for almost everybody not a deadly disease, but you have to get treatment. I’ve had it for 16 years had four reoccurrences. I have a major genetic problem, but I’m still alive because the drugs are so good And I have been through multiple treatments.

I will get back to you.

@stage4lovolmetpc
For some reason, I thought you were in Kansas, must be somebody else that’s been writing in the last day or two.

Let me look into upstate New York.

Here’s the info on an oncologist in Kansas that specializes in prostate cancer.

Rahul A Parikh, MD, PhD
https://findadoctor.kansashealthsystem.com/provider/rahul-a-parikh/1220789
He is at the University of Kansas

Richard and Annette Bloch Cancer Care Pavilion
2650 Shawnee Mission Parkway, Westwood, KS 66205
Phone: 913-588-1227

Hopefully, you can get some better ideas about treatment from this doctor.