Hello, and sorry to hear what you are dealing with. My husband was diagnosed at 53 years old, 4 years ago. He had removal. His PSA was 14.4, PIRADS4, Grade 3, intermediate unfavorable. Gleason score 3+4.
During surgery they saw that it got outside the prostate. The surgeon said "nerve sparing surgery". Fast forward to Nov 2023 his PSA started rising. We watched and waited. Feb 2025 his PSA was .2 and they did a PSMA scan but it was "clear". 8 months later, Oct 2025 PSMA scan done again and it lit up in 2 pelvic nodes.
What we learned along the way, and sharing so it may help you. Here is goes....MOST doctors DO NOT discuss ED issues. You NEED penile therapy, BEFORE AND AFTER surgery. Depending on how strong your erections are prior to surgery will help determine the therapy. And I mean...Injections and a pump. You will lose length in the penis after surgery. Even if a surgeon says "nerve sparing" don't believe it. Even if they TOUCH a nerve during surgery, it can damage the nerve. Most nerves go to "sleep" for 18-24 months after surgery. That is why it is crucial for penile therapy. The penis is a muscle, if you don't give it therapy, it will cause atrophy. Please look up Dr. John Mulhall, from Memorial Sloan Kettering, one of the top 3 sexual health experts in the US. You can find him on Youtube. Google his name and he has written a book and numerous papers. HIS biggest gripe is that his own colleagues at MSK, do not refer men who have prostate cancer, to see him before any treatment that they have.
KEGELS, KEGELS, KEGELS.....lots of core exercises will help with urinary issues after surgery. Also look up Dr. Kwon from Mayo Clinic in Rochester, MN. Extremely knowledgeable. Also, go and get a 2nd and 3rd opinion. Ask for a DECIPHER Score test. Ask for an ARTERA AI Test. Get in shape now if you have a few pounds to lose.
My husband is on hormone meds and just finished 25 rounds of radiation. He is a mental mess. Severe depression from so many things. Join all of the prostate cancer FB groups that you can. Educate yourself!! Best of Luck!!!