Husband’s low psa, aggressive Gleason 8

"I’ve never heard of a .00 PSA"

I've had ultrasensitive PSA tests from two different labs. The hospital lab reports it as "< 0.01". The private lab I used for a bit over a year reported it as "0.00". So while you're entirely correct, strictly speaking, there seems to be a convention sometimes of reporting undetectable PSA as "0.00", just like there's a convention of reporting low risk of progression for early-stage prostate cancer post-treatment as "cured".

Thanks, everyone. Researching this complex disease has been interesting; fascinating, really. The first biopsy done at local hospital mentioned cribriform; cancer center’s results did not. Jeff, I’m glad you chimed in. I know you have knowledge of lots of people with various cases. The production of psa is puzzling to me in this situation. Most cancer cells produce it, some don’t. I assume his is making a small amount, not sure. I believe there are still healthy cells not radiated that are still producing🤷‍♀️ Dr Sholz says that after one month of adt, there should be a 90% decrease in psa. His decrease was 1.9 to 1.1. But I know it takes time. I will say that the three psa test done so far were with different labs but will be at same going forward. But, he has felt pretty good, just some hot flashes, not too bad.

Also consider —> In neuroendocrine prostate cancer (NEPC), PSA levels are often low or normal, making it difficult to detect using traditional PSA testing.

It’s not neuroendocrine now but I know it could turn into

49 years old. Gleason 8, 4+4 on left side of prostate. PET scan is coming up in a few days. First opinion from urologist- RP. Oncologist is in 100% agreement. Terrified.

Make sure to speak to a radiation oncologist. Proton radiation does not have the long-term risk of Cancer. They use it in children with brain cancer because of that.

If your pet scan shows any spread, radiation is almost essential.

A second opinion from a center of excellence could give you a lot more choices. Are you working with a medical oncologist or a Genito urinary oncologist? The GU oncologists Specialize in prostate cancer. Medical oncologist work with all different kinds of Cancers, They can’t specialize and keep up with the latest things going on.

I know people that are in their second decade after having a Gleason eight and radiation or surgery. With today’s treatments, you will probably live decades.

I’ve had PC for 15 years, Had surgery and radiation and three different types of drugs. I’ve got the genetic problem of BRCA2 Which prevents cells from correcting errors. The drugs keep me going even after 4 Reoccurrences.

Consider that this is the NCCN guideline for your diagnosis.

I’m glad to hear you are doing well. I’ve had prostate cancer for 9 years. I had radical prostatectomy, and then radiation, and then lymph node removal from my pelvis. Despite all that, my PSA is starting to rise again. My doctors say that when my PSA gets high enough, they will do the PSMA-PET scan again and try and find out where it is, and then decide on a new treatment plan then.
I am 61 years old.
Good luck to you.

Dont be terrified . I had the operation and things are good now . PSA is low at 0.06- 0.032 . Its takes about a month or so to recover from surgery but in the end its gone . With surgery you also get the benefit od doign a proper biopsy on entire gland . You can also take samples pf tissues and SV's , limp nodes etc ... this can be very important as time goes on . Keep us in the loop of you dates and progress . We care bud ! God Bless ! James

This the first i have heard of neuroendocrine prostate cancer, and the potential for morphing. I will do a little research, but can you provide more info on this?

Im trying to dig in to treatment options - have cribiform morphologies and 93 Decipher. had RP 6/18, hopeful, but realistic about recurrence. 4+3 (without factoring in Cribiform), EPE, but clean margins, pelvic lymph nodes and vesicles. Clean PET. So little info (that I can find) on cribiform/IDC treatment plans.....but the good news is there looks to be a lot of potential solutions.