Well well. In the midst of the club no one wants to be a part of and just wanted to add my input. It seems that the treatment of prostate cancer often glazes over the fact that you will be sexually impacted severely. Depending on treatment outcome that could be a 0 to 7. Seems like the topic isn’t really brought up maybe I’m biased as I’m in Japan but I brought it up with a translator and was brushed off. I am in my mid 50s and pretty young looking nobody would think that I am .. masterbated or had sex every single day .. but… after bipopsy was bloody loads scary actually.. never mentioned .. I mean now I research a lot. Once the hormone therapy time kicked in pretty horrible .. didn’t touch my dick for months.. had brachytherapy and then some radiation and nothing. I’m married, understanding wife but throw in tits emerging , penis shrinkage , and its sexual mutilation. Not sure if people really understand that going into it. Yes let’s get cured but understand the ramifications. I have to give credit to those who seek active surveillance and squeeze out some QOL before the shoe drops. I imagine many people who have a Prostatectomy would have more to add. I mean hormone therapy given to sexual imprisoned predators.. so that’s it. Not sure if a anything will be normal after HT treatment but 8 months in just know it sucks .but of course we should all be grateful that are lives are, prolonged at least that’s the doctors perspective…funny can’t even change typos or commas here like something doesn’t want me to communicate.. eveにhad ever thing deleted last time I tried ..
Prostate cancer treatment and sexual ... - Advanced Prostate...
Prostate cancer treatment and sexual mutilation
"I mean hormone therapy given to sexual imprisoned predators.. so that’s it. " and it does NOT work, because those predators are about power and not sex. You can keep active with the right kind of exercises (and viagra and pumps I have been told) to avoid shrinkage and you can even still have (random) erections while on ADT (the biggest sex organ is your brain after all). What I can tell you personally, it's that it is not a matter of "cannot do it" but more a matter of "I am still in a phase where I don't even care to think about it".
You are impressive read your bio! Will check it out more and see if I can follow. I often feel I can be there but hormones make me sad currently as well as the isolation in another country. Have been working out for the 35 years .. things may change but I just wanted let people know that you will not be the same after treatment. I don’t feel like it’s really not discussed enough here. Hence active surveillance for a period of time can be beneficial depending on your goals. Wish you the best !
Yes if you can afford it it's great to do active surveillance. The truth is (I think it is) that we are alone. Only someone who is diagnosed with a terminal illness can understand someone with a similar illness. It's not that people around us don't care, they simply can't. That's why this is kind of a brotherhood. We are here with you man!
ADT hasn't affected me much, with use of tri-mix my sex life goes on like it did before using Cialis. Penis shrinkage is a bit annoying but hey wife still enjoys sex at 60 so we are doing great
Most urologist surgeons and MO’s will tell you the truth about the treatments, even if in insufficient detail. The question is always will you accept the potential decimation of your sex life in exchange for eradicating the disease. Some cannot answer that readily.
Sadly, it’s true that surgeons in particular not only don’t talk enough about side effects, they boast that they will ‘get it all’ in cases where it’s highly unlikely.
I just know that in the beginning, we were so relieved that my husband wasn't going to die right away that we brushed off the end of a huge part of our sexual relationship. Now, five years in to this. We both mourn it and talk about it. We miss it. However, we have grown closer and intimate in other ways. I won't say it makes up for it. It sucks. It's ok to say it. 🌿💥you aren't alone.
I am so sorry you are getting this at such a young age. For me at 70 I am ok with the sexual side effects. It would be bad if I wanted it but could not do it. Fortunately I can do it but don’t want to. My wife at 70 is ok with this. Guessing I would feel different at your age. I got electron radiation to my breast so I don’t have that problem. I think we are all trying to stay alive long enough for them to come up with a better therapy.
I just pull out my old Devo song and sing and sling : " When a problem comes along you must whip it whip it good... now shape it up ... it's not to late to whip it" works for me, lol
Have to agree that more education and information could have significantly changed some of the things that happened.
Could have prevented the side effects of E.D., and penile shrinkage (or at least reduced the impact), etc. I developed venous leakage to the point where no pills or shots would provide a usable erection. So, I got a penile implant and starting using a penis sleeve to deal with the impact of the shrinkage.
You just have to accept your new version of normal and go on with your life. You did what you needed to deal with having the disease and the treatments and now you have to adapt to how life is after that.
This topic really hit home for me, at 51 yrs old had a PSA of 4 on a routine blood test, guess I went into denial but monitored for a year and talked myself into BPH as the cause. I did some things right with daily workouts and supplements etc but went on with my life avoiding PSA tests, sounds absolutely whack now but had little burden, then fast forward 15 years I was getting very bad pain in my hips, I read this could be PCa spread and was convinced that was the case and went for a blood test, I remember like it was yesterday sitting in my car pulling up the PSA result and seeing the result 168. I literally thought my days were numbered, After freaking out completely for several days I wanted ADT as fast as possible, however, the way the system works was biopsy, blood in semen by the way in my mind may have caused some spread there but the result had the one dreaded GS8 among 5,6,7s. On to the MO who rightfully wanted a PSMA scan before ADT. I thought it was going to light up everywhere, I went in for the result and the first thing he said was I have some.good news, was not showing spread beyond prostate, of course I now know cells could have escaped, we started Firmagon to not spike T with Lupron then added Abi and PSA tumbled. Now just finished treatment 28 IMRT on my way to 40. All of this is such a daily challenge from ADT and IMRT side effects. Sorry a long story but after reading your post got me wondering, would I change anything, If not for the GS8 may have made sense to wait but in my case had to throw everything at it, I believe exercise changed the course of my trajectory as has been discussed here, yesterday my blood test showed .02 as we know subject to change but counters in my mind the ADT effects, hopefully I can get off ADT someday and find my weaner again 
Hello, I know exactly where you are at. When I first started ADT I couldn't even look at a porn magazine or anything. Could even hug my wife. After awhile my interest in sex grew so I sought out some fixes. Did the pump but I didn't like that . By the time I found out ,or would consider the penile Implant I lost over half my length. Even scared the guy that did the implant! But it works. Now , 13 years into this I get interested in sex then sometimes not. It's always changing. If I would have known about the implant sooner it would have Made a difference. It was never mentioned. The thing in my urologist office was , sex is not everything. It's not but sure would of helped me a little.Best of luck! It's not over!
Just think of the brighter side......No more expensive dinners....just have to buy two Japadogs to go.........
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 01/20/2024 4:50 PM EST
My urologist and radiation oncologist never mentioned anything about sexual side effects, and a lot of the websites leave out some of them. It wasn't until I started following this forum that I realized that I wasn't just imagining some of the things going on, and in some respects it was too late. 🦊
Amazing...the USA is not much different than Japan! Trust that we in America are given very little information on the impacts of our treatment on sexual health. Its not on the radar for surgeons, radiologists or in my case, even those hired to look out for your sexual health. My discovery of the side effects of treatment on sexual health have been of my own effort, caused by my realization that things were happening to me. I had no preparation for much of what occurred to me due mainly to my treatment. Would I have done the same treatment again, knowing what I know? Yes and no. I would have been slower to start ADT and would have been much more aggressive once I started in using injections or the VED to prevent atrophy of my penis. But I did not know anything was happening for the 1st year of my ADT treatment...
This podcast is the definitive discussion of the impacts of ADT treatment on sexual health. For me it was ADT that did the most harm and from which I had the least information. Had I known what I later found out I would have moved immediately to an implant, before I started 21 months of ADT...but I had no idea what was happening to me. I fortunately found out late, but not too late, what was occurring and salvaged what I could. I am happy with what I have been able to recover, but it could have been so, so much better had I know.
We need to tell men in this forum the facts about ADT treatment. They need to know also what happens starting the first morning you wake up from surgery, not having had any nocturnal erections and what will happen to your sexual organ's physiology going forward. Some in this forum state that they were told; good. I was not and I fear the majority are not. How do I know?
healthunlocked.com/active-s...
I have listened to many, many professional discussions regarding all manner of treatment. I would estimate that I have listened to well over 200 podcasts of Doctors talking to Doctors about PCa (prostate cancer). I have heard surgeons, and oncologists and urologists and all manner of experts talk about all types of treatment. Rarely do they ever bring up sexual side effects and if they do its 'one-liners' without any real detail. Its never discussed with any real effort or focus. Well, in the forum included above its discussed and by Woman urologists! Go figure! You would think that men being treated my other men would be the ideal setting for honest discussion of sexual health; nope.
So, anyone who is coming along take note. Make your decisions based on all the facts. If you need ADT take it. If you need surgery or radiation, proceed. But know the consequences. There really are good measures you can take that will help you recover as much of your sexual function as is possible. Spoiler alert; its never going to be what you had going into treatment, even with an implant (dont let anyone tell you otherwise). BUT it can be a lot more and much better than you think, as long as you take the correct action prior to start of treatment.
Thanks Yokohama2023 for letting me know that what I experiences is not unusual, even for the USA; it seems to be world wide. But it does not have to be all bad. It can be pretty good as long as you are informed. Rick
Thanks for this.. saw a YouTube video .. pcri.org after this post .. Mark mentioned we generally have erections at night or masterbate or have sex during the day.. the old adage use it or lose it.. when we do none of the above for an extended period of time it impacts our Johnson … so many mention penis pumps etc.. the joy…
yeah. The kindest thing one can say about the industry, especially the RP segment, is they believe their own BS and/or have convinced themselves that being frank may cause someone to avoid treatment, and die.
My guy never got back to me with a questionnaire about SEs. (Or even PSA). I’m assuming only guys who come into the office are given the sheet. (I always was). Therefore, for this guy, and likely most, there is huge selection bias in their individual numbers. And if that favors them, there’s no incentive to change that
TA had the best advice:run from anyone who brags about their numbers. My guy was a braggart.
How I can relate, Yokohama. Been in Japan nearly 30 years myself, discovered PCa originally at 55 (stage 1, no sign of tumors anywhere), got brachy at 56 and thought it was finished but discovered metastasis eight years later. As a very sexually active person myself, and having researched extensively the side-effects of ADT, I refused any treatment other than diet, exercise, and supplements after discovering metastasis and that kept me going for a year-and-half, by which time my PSA had hit 47 and a tumor showed up in a lymph gland. Did six solid months of double ADT which dropped my PSA to zero and got rid of the tumor, but the sexual disfunction started big time, as well. Thereafter, even when only doing treatments for a few weeks to a few months at a time, it has continued, and now eight years of the light treatment has still made me nearly impotent. Along with my dick being 20-30% smaller than 10 years ago, and even taking "vitamin V," I haven't had an erection more than a quarter- to half-mast for that entire time. I've just come to accept it as the price of my life--which, of course, is much easier now at 75 that it was even in my 60s. Good luck, brother.
Thanks for your input it’s helpful. I was offered brachytherapy with a LINAC boost.. of course with ADT both forms Bic and Lu.. it’s always great to be alive … it’s nice that your tumor went way I guess if you have activity there then anything is possible .. the verdict is still out as I get close to ending my ADT. I think we are lucky to have had the brachytherapy option .. I wish you the best .. if you get bored ping me always up for meeting new people .. of course I’m in Yokohama..haha.
I could add, though, that while off the hormone treatments for a few months each year, I was able to have some sexual activity. Never as satisfying before, but better than sexual death. I also kept a diary of my journey through the physical and mental anguish the treatments caused me for a big chunk of the 18 years since I first discovered PCa, and I published journal from that diary on Amazon KDP books. Trying to be as humorous as possible about a situation I could do little about, I entitled it, "Becoming Half Woman & Other Adventures with Prostate Cancer: Journal 1, the First 18 Years."😆
Just ordered the book. Should be here Thursday January 25th. Am looking forward to reading it.
Thanks, Jack. I'd appreciate your candid thoughts once you're finished with it. It's pretty graphic at times.
Will be glad to. By the way, I love the cover.
Telling it like it is mate. I admire your honesty.
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