I am 18 months post treatment and so far all looks good on the PC front. No noticeable symptoms and PSA is virtually nonexistant. On the side effects, the ED is handled with tadalafil, but I still have serious interest/libido problems. Could be tied to just the general stress of the process plus covid-shut down behavior changes, and other family issues etc, but it seems to be treatement related.... My docs dont want to address the libido because of concerns it could aggravate cancer, but that sort of leaves me with nowhere to turn.. Any thoughts.
Other question is whether the penis shrinkage ever fully reverses? It's come back some, but not totally. When I was circumsized as an infant, a fair amount of foreskin flap was left, which was never an issue because of the size of the head, but now that it has shrunk it actually interferes when urinating at times.... If the size will not return, I'm thinking of getting it trimmed...
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StLouisGuy
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(1) Everyone needs a different amount of testosterone for a good libido. Hopefully, your T level will continue to improve. The problem with supplementing T is not aggravating the cancer, it is that it will cause your PSA to rise. Then, is the PSA increase due to recurrence or is it due to benign causes? You can try supplementing after you've had a few years of convincingly low PSAs.
(2) The size loss is due to the ADT you had and the lack of blood flow to the penis because of it. You can try to reinvigorate the tissue by using a mechanical pump everyday. Nightly low dose ED meds may help too.
I want to make sure I understand your response regarding T supplements. I was under the impression from docs that supplementing T is like putting fertilizer on a plant (that was the analogy used when I questioned him). You're saying that is not true, correct? BUT, that T supplement will cause one's PSA to rise and THAT is the real issue. If it goes up, then, what is the cause? Post IMRT, bracy boost and ADT, I've had a stable PSA of 0.03 for 2 yrs. Your thoughts about trying a supplement?
Yes, that is what I'm saying. Whoever misinformed has no research to back it up. PSA may rise due to benign causes. I supplement T for the last 3 years.
Interesting articles. The conclusions I read stated that T supplementation did not lead to recurrent PCa. My conclusion is that they had no prostate cancer left for the T to affect. We all know that T does, in fact, "feed" prostate cancer, otherwise there would be no hormone therapy for it. So, if a person takes T post treatment, they are assuming they'll have no recurrence. While T won't cause the recurrence, it sure as hell will accelerate it if recurrence happens.
Finally got the details re Testosterone and aggravating PC. It is NOT the testosterobe, per se. Men need estrogen as well as testosterone but for men the estrogen is created by the body converting some testosterone into estrogen rather than it being directly created as in women. It is actually the estrogen that can feed cancer, so testosterone is shot down for therapy as the way to get to the estrogen. Testosterone enhancement, if done in conjunction with medication to slow or prevent conversion to estrogen (anastrozole, for example) is generally thought to be low risk.
I agree with Tall_Allen re pump and ED med at night (try sildenifil - generic form of Viagra).
I used a pump and it works. That is, it causes blood to flow to your penis resulting in an erection. My problem was that, because of the ADT, I had NO interest in anything sexual; all seemed to be a joyless exercise in futility. I was lucky: I was in a study that provided a free pump and pills. I also did some research about what to look for in a pump. Bottom line: NuPath seemed to among the better ones.
To give you a direct answer to your question re genital atrophy/shrinkage: From personal experience and from what I've read, the answer is, "No, you're stuck with whatcha got." Many men here will tell you that their testicles post ADT are the size of small grapes or raisins, their erections are not as hard or big, and their orgasms (if they can achieve one) are simply not the same (and with no ejaculate either). Unfortunately, no doctor
was candid about this and, despite my reading, I had no idea of the impact that these changes would have on me. And, the changes were sudden; didn't have months to adjust to them. Combined with the emotional roller coaster brought on by the ADT, I was depressed, despairing and at a loss. In fact, "loss" was my underlying emotion. Wasn't aware of that at the time; only in hindsight. Grief, loss.
And, to add to it all: it took 18 mos to recover from the ADT. It was slow and difficult. My T was which was never much above 250 pre-treatment, has returned to a roaring 183. LOL It seems unlikely that it'll go much higher. But, on the bright side, PSA remains at 0.03. Woo-hoo.
Good luck to you. I hope you have a better recovery than I did.
Thanks for sharing. My T was also never roaring but was in the mid to high 400s pre treatment. was systematically rising post treatment and reached 340 something, but then dropped to the current 276.5.... I guess the question for me is when, if ever, do I try to boost my T, or do I just accept the fact that at 62 it is what it is, and embrace a new life...
Sorry, but I really don't know if trying to boost your T is a good idea or not. I've read that T is like fertilizer to PCa but I've also read that some docs recommend it.
I'd love to have higher T and the libido that often goes with it but I'm afraid to screw with the possible negative consequences. So, for me, I am what I am.
I'd chat with a doc or two and listen to what they say.
That is what I've thought about T being the fertilizer, but Tall_Allen above says thats a misconception. so I am going to look into it. Keeping the PC in check is much more impt to me, so will be cautious. I am going to have my bioavailable testosterone determined in my next blood test in April, cuz apparently that's the actual relevant #. Unless I'm pretty sure that there is a minimal PC aggravation risk however I will probably not do anything. My PSA has been steady the last three checks at .1 and dont wanna mess with that.
I'm on active surveillance but have also noticed some shrinkage over the past year or two. I was thinking it might be due to age, and/or my use of penile rings (to use the better name) for many years has now had a detrimental affect. Anyone's thoughts?I'm also taking Lexapro which definitely has an impact on when I am in the mood. If you haven't already, try some cannabis (in whatever form you like) if you think sex might be in the cards. For many it is a great addition to enjoy sex, touching, etc. Another reason it's popular.
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Go through with radical prostatectomy or explore Hifu?
The other side of ADT
Another what the hell problem 
