Newly diagnosed with prostate cancer and still gathering information

We have maybe discussed this before; can't remember all of the various posts.

RP at age 68 with G9. Initially no evidence of spread but 6 months later PSMA PET revealed solitary met at T8. Had SBRT. Another 4 months rapid doubling of PSA with new pelvic node on repeat PET. Sought consultation and treatment with very experienced MO at Johns Hopkins. Had triple therapy and whole pelvic radiation 2 months after finishing chemo. My PSA went undetectable after 2nd chemo cycle and has stayed that. My MO discontinued the Lupron after one year; the Darolutamide was discontinued when I finished the chemo (3 months on it). My T never recovered so 6 months ago my MO put me on TRT under guidance of an endocrinologist.

The difference on my sense of well being on T is night and day. I suffered the usual side effects of ADT therapy/low T including anxiety and depression. When I questioned my MO about TRT in the setting of oligo metastatic disease he said I was a 70 year old living in a 90 year old body and I needed the T. He said the triple therapy had killed the aggressive clones as evidenced by > 2 years of undetectable PSA. He said there was a 50% chance of recurrence but if it did come back it would be manageable. Of course, every case is different. TRT isn't for everyone.

BTW, I had not had an erection since my RP in 10/21. a couple of months on the TRT and I started having spontaneous erections. Some of the penile shrinkage has reversed. The testicular shrinkage is here to stay with TRT.

@heavyphil Thanks for this information. I am 14 days now in Orgovyx, I hope that I too will not have a horrible experience with it.

Have you ever tried Orgovyx? The side effects for most people are less; of course there are exceptions but many of us, though we are not fanboys of ADT, have not had horrible experiences.

I had shrinkage of the testicles and penis during the 2 years of ADT (lupron + abiraterone + prednisone). But since treatment ended, they have returned to their original size and function, except for ejaculation.

Not at all. Everything, with the exception of ejaculation, is the same - operationally and size wise.

But I never suffered ED either before or after and the atrophy of disuse can cause shrinkage. I was told that if something did happen then I should use a pump until I recovered or got an implant to prevent the urethra from shrinking, thus causing the penis to also shrink.

I've never heard of testicular shrinkage as the result of RARP, but perhaps testosterone treatments caused that.

How much junk did you have i previously?

How is your equipment AKA 'Junk" Shrunk?" a whole lot or not so much? Mine is beyond small and the twins are much like a pair of raisins. Others please respond please.
SW

If you have one 9 the 7’s and 8’s are not considered, you are considered a Gleason 9. That’s just the way it works, your chance of reoccurrence is increased due to it. If you were to have a prostatectomy and your prostate were examined part of it would have Gleason nine cells in it. Those cells didn’t graduate from seven or eight to a nine, they started off and grew as a nines.

The question is why does it reoccur? At last week’s PCRI conference this was mentioned.

“Seeds for metastasis were already there when surgery was done, waiting to grow.”

My Gleasons were 7 through 9 Hope this makes it clear. I dropped my ADT twice because of the HORRIBLE side effects.
SW

I and many others had nerve sparing surgery, it's not a myth - not even mostly a myth or partially a myth. I have no ED and am dry - not a single millisecond of either issue.

I'm sorry that your treatment has been such a tough ride, it's easy to get bitter with such things.