Hello all, trying to see if I can get some answers from folks in the trenches instead of winks and nods I get from the docs.
Im 55 had prostatectomy in 11/15/23, gleason 9 in one core with a 1mm positive margin. Gleason 7 in two other cores, and disease only in 1/2 of prostate. Had resection in lymphnodes and seminal vesicles which were negative, an psma scan was negative. Mri also "confirmed" confined/localized disease. As of 7/15/24 Im still <0.04. I remain positive but think alot about disease progression. This insidious disease is hard on the body and the mind so my heart goes out to each and every one of you and your families.
In may I regained urinary function thank God, and I only wear a small thin safety pad now in case there are drops etc but id say im 95% back to "normal" as far as staying dry, although nothing feels the same anymore if that makes any sense.
My biggest issue is sexual function which is still zero. I had nerve sparing prostatectomy and 9 months later nothing. 20 mg of cialis and 100 mg of viagra do basically nothing. I recently started tri mix which does "something" but not enough, except for one time which did work enough for intercourse, but I suspect its because I committed a no no and combined it with viagra. I ve only tried 5-6 injections so maybe need more experimentation with dose calibration etc.
The doctors tell me that I need to "wait" for at least 18 months to see if erections return, Im curious what you folks think about this? Do any of you have a similar story to mine in which erections returned even with the aid of oral meds like cialis?
Im worries that I keep waiting and nothing happens, or even worse the radiation guy gets me with a rising psa and ill be done anyway.
My dilemma is waiting or just accepting this mess and go for the implant which seems like no picnic but at least might remove the humiliation factor from this situation at the time of intimacy.
I also had kne urologist tell me that if nothing has happened now it wont naturally but that contradicts the other 3-4 opinions I have.
Sorry for the disseration but hopefully some of you out there can offer some help here.
All my respect and thanks in advance,
N
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Time is your friend in this instance; while cialis worked for me after about 9 months, at 2 years post RALP I didn’t need to use it anymore. It’s also important to note that mindset plays a key role in this; you can be your own worst enemy nagging Willie to perform.
I’m hopeful I’ll have a return of function when my testosterone returns from my llatest treatment. I hope you are successful as well. Good luck!
Thank you so much , and sorry for the follow up, did you also have zero function until about 9 months when it started to work? was it some kind of process with partial erections until two yrs, or did u wake up one day and nerves worked and you had an erection? Im just curious if it was gradual, sudden, etc? Also were you ever undetectable after surgery? you mention hormone therapy so im assuming to required salvage radiation? thanks again sir
No worries. As to your query, the first 6 months I tried relentlessly to get back to normal to no avail. 6-9 months I tried sildenafil, which did have an effect but not enough for intercourse. Cialis allowed intercourse for brief periods. This improved slowly until 2 years when I felt “ back to normal.
And yes, two rounds of salvage with 6 months ADT each time. I just stopped my Abiraterone and my Lupron shot should begin wearing off soon (cross fingers).
I recovered adequately, naturally, a year after my RP. Looking back, I wish I had know about proper penile rehab and penile pump. I almost never speak out against docs although I do disagree at times. Based on my own experience and discussions with many a men, too often it seems urologists who did our RP's are not truely concerned for our sexual recovery and IMO the 18 months is without foundation - a kick-the-can down the road and here is your pill approach. As others have shared, attitude and your otherwise physical fitness are key too.
Regarding disease progression, this remains my focus four treatments and nearly ten years later. IMO seek out ultrasenstive testing that reports to <0.010 (noting disparities in opinions on this topic within this forum and medical community). My uPSA has been holding 0.03X range past three years, no ADT, and I maintain a close watch on this beast. All the best!
thanks again I do use the penile pump and have been, it does create an erection that only hokds during pump but I do it for therapy. Also excercise and eat well, as well as many other regiments I follow. This post has helped me to understand I need to be patient. Thanks to all.
Vacurect. It comes with a set of rings, but if none are large enough you can order larger ones from the manufacturer. I lost a good deal of length from the surgery, but the base not as much so I had to order the size "L" ring. The ring holes are not really that large, so be sure you get what you need. You want to fit the ring neither too tightly or loosely. The vacuum action is excellent.
Thank you Nano, do you mind if you can elaborate on your recovery 1 yr after surgery? was it gradual? or was it like me basically zero until about 12 months and progress began? thanks
years back, no diary, memories fade, egos inflate (nice pun 50% 2-3 months out, then consistent slow rise to 75%, a bit disheartened up to 12ish month, then a surge to sufficient for penetration,
thanks Im at zero at 9 months, the purpose of this query was to see of people who recovered had at least some function 9 months in, your recovery seems to be what would be consistent with getting functikn back because it was gradual, this goves me food for thought, thank you
One thing I’d add in your situation is to absolutely get a ultrasensitive PSA test from Labcorp (if in the U.S.) or somewhere else that has a threshold of less than 0.01. If you have to pay out of pocket, they don’t cost much. There are plenty of studies that show once you reach >0.03 coming from below that you are going to have BCR. Given your high Gleason and the fact that your results are bouncing around 0.04 given your past couple of tests, it seems like a no-brainer to get a lower threshold test done.
thanks tall allen Im going to keep trying to restore natural function , going to do more vaccum pump work. Im a little discouraged function is zero after 9 months but Im going to see how things are after at 12 months. Tks again
seriously pal, you had/ have a major disease do forget about your fick snd start to live!!!
However, done you asked, after 26 years, I was still able to have wrectiobs- crappy but worked, and orgasms- but need lots of hd d action due to lose of sensation! Hmm nerve sparing requires greater surgeon skill and is a gamble perhaps not worth taking but you are where you’re at.
You can still do great things with your tongue etc for your partner but if you stay alive but no more orgasms, WTF
be very thankful because with gleason 9, that is a death sentence,
You need to do some soul searching. When a newly diagnosed man comes on the site and is looking for support and information, it is not helpful to end your post with "be thankful because with G9, that is a death sentence". If you yourself don't understand why, ask most any random person and they will explain it to you. Furthermore, that is inaccurate. There are many men living for decades with that diagnosis; it depends on the individual and their circumstances. Treatment options have progressed rapidly from older studies regarding Gleason numbers, staging of disease and prognosis.
Good for you if you have helped other men with this disease. If you have the experience you claim to have, with some reflection you will realize your initial post was unhelpful at best and hurtful at worst.
Yes and no, sorry the stats are what they are, NO point in closing ones eyes to the facts and large volume of stats, it is like the lottery, DO NOT PLAN YOUR LIFE AROUND WINNING THE LOTTERY !!!!
If you learn to live with pc, your life will be better! Also, you are correct shit happens, as in how am I still alive, after 26 years, Gleason 7/8, but I am the only guy who lasted beyond 12 so I say live large and plan on the percentages and if you get extra time great but do not close your eyes and create this false image of living forever with pc!
You have now really peaked my interest sir. Are you professing now to be the only prostate cancer patient alive today who has survived gleason 8 prostate cancer past 12 years? To help you with your response here is your written statement above; " I am the only guy who lasted beyond 12 so I say live large" ....,Am I again misunderstanding you?? or is this a statement you stand by? Thank you again for your time. Cheers
Im not sure if this is a joke? Do people on here tolerate your comments? Forget about my fick at 55 yrs of age? Your entire reply is utter nonsense. What the heck does " stay alive and no more orgasms mean" ?? and "nerve sparing surgery is a gamble" ? compared to what? Surgeons do this surgery if the cancer is not bulky and nerves can be preserved. Are you in this site promoting cutting off nerve bundles that can be spared? are you drunk? and finally "gleason 9 is a death sentence"?? Many gleason 9 patients with negative psma scans are actually cured and many live for many years with proper treatment. Yes ita aggressive disease and potentially fatal but a "death sentence" There is no empirical evidence that it is a "death sentence".. People on this site tolerate your coments? Im not sure if you have brain damage but there are people who might come on this site seeking answers and support and dealing with a complete tool like you can discourage them for yrs to come, I regret seeing your reply frankly. If you are allowed to stay on this site I hope I get kicked off. Tall_Allen
You don’t have accept permanent ED, no matter what anyone tells you. You also are by no means guaranteed to get your function back, no matter how much you pumping and pill taking you do.
Urologic surgeons are understandably dodgy about this when selling RP, it’s their livelihood. It’s also a good reason to not trust them on the subject. They can be evasive and sugar coat the truth and statistics with word salad etc.
Do all you can with the pump. Keep taking the pills if you don’t have undesirable side effects from them. Same with the injections.
However, I’m surprised almost no one mentions the penile implant when discussing this. Just as the AUS (artificial urinary sphincter) is a very effective last resort for incontinence, the implant works well for many men.
Do your research! Anecdotal evidence on this board or anywhere else can be interesting but is not reliable. For instance , lots of guys are happy with Trimix , but I did not like it at all for a number of reasons.
ED, especially as we age, is complex and driven by a wide range of factors even without our disease and its treatments. The implant may well be the answer-especially if everything else fails.
Hi london thanks for your objective take. Frankly Im trying to stay positive on natural recovery but again just like with the docs, some here say natural recovery is likely and others say its prob never going to happen. Who knows. Just like everything else with this insidious disease its 50/50. For now I think I have to be grateful for my present state and the rest is in Gods hands.
My thought is that even if I do get erections back there is always a possibility of recurrence which means hormone therapy and radiation or who knows what else, which will probably eliminate odds of natural recovery anyway. There is also always the risk of disease progression which in the end makes the point moot but as a human being I want to make the best of things while Im still vertical. Again I realize I need to focus on the good things in my life for now.
The implant sounds like no picnic but im conscious for months now that it may be my only option to have some type of sexual relations for my remaining time on this planet . I saw a video of Ryan Oneal saying he was never the same man after prostate c treatment and I now know what he meant.
I had a prostatectomy 11/23 and hernia surgery 7/24 so I need to heal my body anyway before undertaking yet another surgery.(implant) Honestly If things dont turn around in next six months Ill go down the implant path to not lose more precious time rhat is of course all else remaining constant. Ill note ; I have zero results from oral meds and tri mix injections are not my favorite and appear to not be working yet either although Im just starting on them.
I often think the best thing is just to move on from all this tbh. Although Im grateful for reading Bios such as yours as they have helped me on this weird journey. I understand that this is what I have and oh well it is what it is. However , the forums, the youtube videos, the internet searches, the diet concerns, and all for something that is either going to happen or its not , is great to be kept informed but im not sure if its best. At my age 55 , there are a myriad of other things that can off me from this world including getting hit by a truck or a heart attack si I may just have to learn to accept this for what it is.
I really appreciate your perspective as it makes me realize I just have to make some choices moving forward and folks like you that help akl of us with this disease to gain insight into what to do moving forward, thanks.
Is your partner pressuring you in any way to rush this process? You are relatively young to be giving up intercourse and perhaps she is younger still? There is little that will “kill Willy” more than pressure. Hope she too is patient.
for the record: you got very lucky and should be extremely thankful and if you have some inconveniences in your life, it still beats dying!
What upsets me is the FACT, we are now short of specialists and your spending so much time means other men are NOT able to get basic treatment. It is why I hate doctor shopping and some expecting that life will be as it was!
You are in a war and have been injured. You need to adjust to this reality.
In other words, think of others and NOT just yourself! And that includes your wife and doing what it takes to make her happy!
It is not my intent to create needless upset but I have lost some of my closest friends to pc so am very sensitive to those, who fail to realize just how lucky they are, and not criticize those of us who have given thousands of hours of our time for free to help others. You go do what I have for the prostate movement then come back and tell me how to behave!
This site is the best in the world and that is because of those of us who care about others!
It actually happened, your second reply is as foolish as your first. Now your insinuating Im a selfish person because I seek different doctors opinions? Also because I come on a forum to get opinions about my condition Im thinking about myself? Youre nothing but a clown who actually envisions himself on a world stage. I hope you now go away but something tells me you will continue to write more jibberish that Ill need mayan code in order to decipher since most of what you write is incomprehensible. Go help others all over the world, the fact you are allowed to voice your delusion on this site is extremely concerning.
You just proved how selfish you are! Please tell us what you have done to help others inflicted with prostate cancer pal! My record of service over 26 years is well documented, show us yours and we can compare Mr. Hot air full of himself !
Your record in the prostate cancer world is documented? Of course yes youre the famous billyboy3 , my apologies Dr. I should have done my research before commenting. You are a complete fool and a insignificant circus clown , and absolutely no one knows who you are . Anyone who reads this thread will know you are clown but I wont ne surprised if Im deemed as the bad guy. Im done wasting time with your trolling, and wont read your nonsende or respond to you again. At least you had the sense to google translate your last display of written ignorance and stupidity. Btw Im not your pal.
Newbie? Youre a bigger clown than the other one. I came to this site in which apparently some of you think youre the lords of the manor , with some questions and concerns about sexual function about my prostate cancer. Your helpful friend responded to me in writing for all to see that my concerns were selfish and I should start worrying about the wife I dont even have instead of myself???. He then accused me of being the type of person he dislikes because I seek multiple doctors opinions about my health which in turn takes medical resources away from others while I "Dr. Shop". He finally tells me that my gleason 9 diagnosis is a "death sentence". This may be a private site but invite whoemever runs this site to review his comments as I believe comments like that are legally actionable. Then when I defend myself against his blatantly disrespectful and insensitive comments you come along telling me to take it easy, that I spew venom, and now that I have a bad temper?? . Did you read his comments? Why dont you flake off wherever you came from you moron. Maybe someday a relative of yours will go in a "support" site and someone will tell him or her that his DX is a "death sentence" . We will see how that makes you feel. Go ahead and respond Ill delete without reading, Im done with you zealots.
Yeah. Surgeons are 'dodgy' as one poster put it. Mine claimed 87% of his patients were potent after one year. His main assistant later told me everyone is impotent for at least a year and you have what you're going to have at two years. The PT did not explain to me that the pump was there to replace nocturnal erections. (But, she was mid-70s and brought in out of retirement after spat between surgeon and head PT.) And this was during Covid when everyone was crazy. After 3 years, cialis gives enough of an effect for me; and trimix enough for us. But, as others have said, and you said about urinary function, it still doesn't seem the same.
I'm thankful on behalf of others that TA is here to direct people to focused radiation when it is the better choice. The SE outcomes seem immensely better, with equal or better survival rates. I just missed that window and had to go through 3 years of figuring out how to get things back.
PS If I were the litigious type, I'd sue my surgeon for misrepresentation and hire a forensic accountant to get inside his 87% number. I've been in finance for 43 years. You can make numbers out to be anything you want; and I suspect he and other surgeons have done exactly that. Survivorship bias; definitional exclusion; etc. I actually would like someone to do that, generally. Get the truth out; but these guys and their hospitals make a lot of money off surgery and then the PT. Putting guys through years of distress and often permanent impotence.
thanks, its interesting you mention litigation. My surgeon basically implied Id be engaging in the porn industry within six months but his nurse practioner said youll be impotent forever. Who do you believe when your shocked by this dx , the world famous UM surgeon who has 5k surgeries and is revered all over the world or his NP? I rushed to RP because I was terrified of the C word but even with all my regrets I ultimately would have preferred to have a ball of aggressive cancer removed from my body, although Ill admit it appears rt is the better choice. I now realize its part of their potomac two step act and a masterful example of CYA by the use of good cop bad cop to limit liability. I fell for it hook line and sinker . If the surgeon had discussed the almost inevitable impotence I may have changed my mind, but ill never know now. Additionally UM is a teaching hospital, ive see realized these "centers of excellence" are dangerous because you go under the knife and the assistant works on you while the "world expert" sit back and teaches. Thinking back at numerous events now Im sure this happened to me.
As for sensation I dont have much and Im grateful to be alive but it seems the wonderful pleasures I derived from sexual activity are sadly behind me. I guess such is life and we move forward. Cheers
Your last sentence above kind of sums the journey up.
Buyer’s remorse is a tough. If it is any comfort you are not alone. It is true of both surgery and radiation therapy. Reading this site you will find that most of the cases are from lack of investigation in one form or another.
Easier said than done but you do not get a do over. My next statement is easy for me to write but may not be easy for you to accept.
You can try all the remedies like pills, pumps, etc but in the end you may have to accept what all of us have - The New Normal.
Thanks, Trust me I know my life will never be the same again. I take comfort now in all of the moments I used my manhood and trust me if it were a race , I ran a marathon. Nothing lasts forever in this life and I understand Im a different quarterback with different tools getting a chance to play in the third, maybe fourth quarter of my life. Doesnt mean Ill stop bitching about it, but deep down sir, I get it.
Thanks for the thoughts. Btw Iw owned two MGTDs not sure if that is why you have the namesake.
i had RP surgery in Nov.. 2023. My incontinence was back in 6 months but had ED for 1st year. Have been Taking 5mg of Cialis daily.
Lucky to have 25-50% erection by 12 months, but not enough for penetration. Slowly with time things have gotten better. I’m about at 80% so as most say time is a big part of this if it is going to come back. Also a very understanding partner makes a world of difference.
I am sorry to hear of your diagnosis and the impotency you are suffering through at such a young age. This is truly a devastating disease.
I was diagnosed with G9 at age 68 and underwent RP. Initially, no sign of spread by imaging but PSA started going up after 6 months and eventually a PSMA PET revealed a single T8 met (treated with radiation). Subsequently I had further progression which led me to Johns Hopkins and triple therapy with pelvic radiation. Currently off all meds with an undetectable PSA for almost 2 years. I have been completely impotent since the surgery and have regained 90-95% continence (still have stress induced incontinence-wear a thin pad 24/7).
Now, to give you my 2 cents about your original question. As you can tell from the replies, no one knows if you will regain natural erections. It could take a few years. Meanwhile, you need to do penile maintenance with frequent (daily?, every other day?) sessions with a vacuum pump to stretch the penile erectile tissue and provide additional blood flow. My Urologist prescribed daily Cialis 5mg. He then supplemented with Viagra 50mg every other day. These medications are relatively safe and the generic is low cost. Can't hurt.
Regarding the Trimix. I have used it very successfully. It requires finding the right dose. Most men start low and go up by 5 unit increments until they find the sweet spot. There are different dosages of the 3 medications in Trimix (alprostadil, papaverine and phentolamine ). A urologist skilled in its use can help you find the right combination for you. I have read of men that have successfully used Trimix for decades, so don't give up until you have exhausted the various combinations and dosages. From personal experience I got an erection as firm as when I was a teenager. It may take 1-2 hours for it to go down. The danger in mixing with oral meds like Viagra is you can experience prolonged (>4 hours) erections which can damage the penile tissue and requires emergency medical intervention. So, be careful with that.
A penile pump is a final decision. The urologist removes the erectile tissue in your penis to place the erection tubes so this is not a surgery to be lightly undertaken. It is permanent. You expressed some remorse in having a RP-this is yet another major surgery so I would recommend you exhaust all other options first.
A would not second guess your decision to have an RP over radiation. This is not black and white but I believe you made the right decision at your young age. Yes, you may have local recurrence down the road but then you still have the option of radiation. A G9 is not to be trifled with and having it surgically removed is a great option.
Thank you doc, frankly I only "regret" my surgery because of my loss of sexual function and its more an expression of my frustration than a fact. I believe not having residual noise from prostate gland works best and knowing I debulked the cancer was best optikn for me regardless of rhe side effects of this insidiuos disease. Thank you for your words. Cheers
Just an additional reassurance, to add to the wisdom expressed by others (and info in videos available): I gradually continued to get more functioning back for almost two years after an RP. So it's quite possible more will come for you.
Here is my story; none of it may apply to you. Then there are the outliers; one of our brothers scolded me saying he was absolutely fine after ADT, RT et al and had perfect erections, etc...that 'could' happen. But as I have stated here ad nauseum medicine is statistical. You can do nothing and be the person that comes out fine, falling one side or the other of the belly of the Bell Curve...then there is the far greater chance that you are 'typical' and will experience what most men do, which is what happened too me. If I could do things over I would follow what I wrote in this post. Use from this what makes sense for you. The bummer with this disease is that, once we choose we cant go back; most paths back dont lead to better function. It really is 'use it or lose it' for us. Good luck and let us know how things turn out. TNX Rick
PS delay/ avoid/ prolong the use of ADT until you absolutely have to...it will most probably save your life but more likely end your chances for return to useful sexual function...probably...TNX
penile rehabilitation has been shown to work better than just waiting and should be started early for best results. That involves creating an erecting daily by whatever means. For me that required two modalities: first a sildenafil or cialis in substantial dose. Then the use of either Trimix in adequate dose or a penile pump. I used and still use the Bonro pump which has a non prescription version. Then do with it what you will.
Unfortunately for me I never recovered adequate function since RP and salvage RT in 2007. But I still use sildenafil and Bonro pump to maintain some level of function as this is important for me.
I’m a little worried about your positive margin and perhaps consider a RO consult.
Hello thank you, Im presently undetectable after 9 months and RO @ University of Miami says that he will propose rt and the very onset of a psa rise . He says the most current trials dont show any higher cure rates or survival rates if you do rt while psa is not rising. Im presently pondering this heavily.
Yes I believe the trials did show that in populations of patients. That is for the mean or median patient. Yet there is a wide spread of individuals that differ markedly from the middle. So I too wonder what is best for me as an individual. What are the risks vs possible unknowable benefit? So I sometimes choose a non SOC course, usually on the more aggressive side if the risks are acceptable to me. Hard choices. But the SOC is the default.
I was told don't waste money on pills, they will not work. I never did try pills but go ahead; you might as well try. I was also told to use a penis pump, which I did for a while but never liked it and the damn thing kept breaking.
I'm focused on keeping the cancer under control; sexual function isn't a priority. That's your choice to make. I made my choice on day one.
Cancer has been under control so far with Erleada and Lupron. Hope you are the same.
Nelson…when I went metastatic some 5 years ago I went on Lupron and did 9 rounds of chemo….This killed my libido…At first when I wasn’t too far gone I used viagra, cialis , bi-mix then tri-mix…But after a while you just loose interest and having sex didn’t even come into the picture for over 4 years…So when the Lupron started to fail and my psa started to rise I had read about a new possible theory.,,,,,BAT..,Google it, or look up Bryce Olson a patients story on the internet ..,,It’s Big blasts of Testosterone…I started BAT and almost instantly felt like a man again…I bought a $35 battery operated pump on Amaxon and was back “Getting lucky”…no need for viagra or trimix…and those made me feel crappy anyway…Of course there’s a trade off for BAT , and that’s your PSA goes up….I know some guys do 2 months on BAT then 2 months off while PSA goes down..,.And that’s where I’m at now..,.PSA is high But no more ADT for me because at 86 QOL is more important..Since you’re only 55 this is such a bummer…Bottom line is testosterone usually feeds the cancer so it’s a catch 22 situation….good luck fellow warrior !
Hello Neson, I was in similar state . My doctor kept increasing tri mix strength until I reached triple strength. Upped my dose of it until I achieved a good election. I too did try viagra with the mix at one time . I also use a rubber band on the base of my penis to hold the blood in once I am engorged. The nurse did say that desire is a huge part of the equation and I do have that. I had nerve sparing for half the prostate area and now get semi tumesent, but it took years. My wife gives me therapy regularly with her mouth and it has helped immensely. You will find the right combo for yourself. Don't give up. My sex life is fairly good to good and sometimes excellent. Good luck!
You have to be very patient with yourself. I had a friend who got full erections back at around 18-20 months, be worked hard at it (pun intended). He claims that he can get erections now without any medications or help. You have to keep working at it and be patient. As the Japanese Kaizen philosophy says, small improvements add up...
it takes time, be somewhat patient. It’s something you have to work on every day. And it sort of does turn into work. There’s also a mental component to this. The more it doesn’t work the you doubt. Positive thinking and meditation might be worth a try.
Unfortunately almost everything used to fight prostate cancer will have significant and adverse effects.
These effects may be more tolerable on the older members of this community but not you (or me). Every treatment should be analysed in the framework of are you willing to accept the consequences.
There is wisdom and very important lessons to be learned from many members of this community. If you care to look.
Keep up with the injections as it is the therapy that brings oxygenated blood to the reticle tissues. Also, you may want to use the pump in order to help with the process.
I started with the pump about 6-8 weeks after RAPL with .5 Cialis, began TriMix 5 months later.
I had the left nerve removed, right was spared.
Whatever you do, do t do nothing… that’s when atrophy sets in and then it’s very difficult to recover.
I am almost at the one year mark and I’m beginning to get mild morning erections, nothing useful but very good in keeping things going.
Also, magnesium supplements are purportedly helpful.
Thank you so much for this post, its the one ive been waiting for, which is a fellow man who says he is beginning to get mild erections at the one yr mark, that is real evidence that something can happen after or around a yr. Thank you for sharing and giving me hope sir. Cheers
Thanks man yes Ive been focusing more on pump lately some say its useless but even mentally its good to look down and see my old erections in addition to the benefits.
Im at zero erections at 9 months but I have been using pump since a couple months after surgery albeit not religiously but with some consistency. Im hoping to work on many things over next 4 months until the yr end hopefully something wakes up. I have been told a lot that if nothing has happened yet to forget about it and I refuse to accept that. Ill continue tri mix injections also.
Im a little baffled however by how many comments Ive received from folks stating that sex should not be a concern etc and to just accept being impotent because Im alive. As you said this is an insidious horrific disease and ill add that it takes your dignity and your manhood and all of youve known as a man since puberty.
Thanks again for your inspiration it means more than you know.
Comments that you shouldn’t be concerned are from people who are not sexually active.
Yes, survival is paramount as if you don’t, you have nothing.
And the pump isn’t useless, one of the top sexual dysfunction specialists said, to me, it is effective only in maintaing size, trimix is the therapy that gets things working again.
At 62, when I first was diagnosed with PC, I was very sexually active. My sexuality is part of my being, when I lost my prostate to cancer it was as if part of my soul was removed.
sexuality aside, the emotional aspect of PC cannot be overstated.
What was important, that I forgot, was…
Even though you are flaccid, work on trying to bring yourself to orgasm.
This, I believe helps the nerves, be patient but work at it. I now have orgasms that reach to prostate pocket and muscles are beginning to contract during. Not as powerful as before PC, but very reminiscent of.
All noted, thanks man.. yes Im grateful to be alive and conscious of the main goal. I too was very sexually active and this has been brutal. Hey Im alive and still kicking so Ill make the best lemonade I can. Thanks again for all the tips. Ill let you know how it all goes. cheers
Until you become more humble and appreciative, I will not respond to you again, but let me close, I have been battling now for 26 YEARS and am in fact the longest living advanced prostate cancer survivor on the planet. With that comes a body of knowledge and support work including helping to raise millions of dollars for research etc
Your attacking me was both foolish and ill timed I suggest but you will learn I hope at some point and then get off your ass and help others! You attack well- poorly @ to ignorance, but let’s see what you offer for your those who are not as lucky! As we need volunteers everywhere to help our boys!!
As every MAN here will attest, if you do not become insane in the endless fight against advanced pc, which a man can never win, then you were insane before you started the war!!!
Wait until you’ve been on the front line a few years, where every advance is met with counter attacks by our pc, then you might just clue in and learn to appreciate your luck at having us gray beards here to guide you along the dark path!
I think you might be crazier than a cow bell but youre a funny guy and in the end you probably do mean well. Youve got me all wrong. I appreciate all help, and I know I have PCa and its not favorable. Ill be here until God says so and not a minute longer. All Im trying to do is get a little insight on how to manage my ED , which I have, and by no means do I diminish my diagnosis. For now Im undetectable after 9 months of surgery, and genomic tests are predictive of low chance of metastatic spread with prostate removal. Psma scans and mri were all clear, and negative LN and SVI involvement. Sadly there was a positive margin. What does that all mean to me? Squat. I have cancer and I will never be the man I was before 11/15/2023, no matter what happens. God allowed this to happen and Im grateful it wasnt one of the other horrible diseases out there as this one buys me some time to live and plan some things, for that I am grateful.
I will not bicker with you anymore and I apologize for taking things personal, I need more growth because regardless of how much I disagree with a lot of what you have said I should have looked the other way.
I congratulate you on 26 yrs of looking at this monster in the face, I read your Bio and youve been through a lot. I pray and hope that pain from this horrible affliction never finds you.
I had an RT in 2016, and natural erections are a thing of the past. BUT, I use a vacuum pump, and I get a great erection every time. The wife is very happy too
I'll be brief, so many words of anger flying around, shame on you guys, sex is important to some of us. My implant is fabulous, hard any time and for as long as you want, and for as long as she (or he) wants. Fantastic orgasms. There's a thread on franktalk.org, there's a series of videos on youtube called Meet The Penis, google that and Perito Urology. Read and watch up. Get the best doctor you can, i.e., with a lot of experience. I am surprised not more men here have mentioned implants. I won't reply to any questions here. Good luck!
I had two schwannomas/benign tumours on my prostate gland went to GP, [I have Schwannomatosis, fully diagnosed 2017] unfortunately March 2020, and coincidently was diagnosed diabetes 2 [metformin from then on] PANDEMIC ISOLATION eventually in June 2022 tested for Prostate Cancer biopsy PSA 10, went in for 20 sessions radiation, AND decapeptyl SR injections, unfortunately life changing reaction with the treatment and my pectus carinatum/pigeon chest osteoporosis [rib cage structure] and testosterone is a little bit underscore [pornhub 😲😵😖] then in Nov 2023 told no need more PSA tests [as my GP said "I probably never had PC?", although now sterile and a regular user of the incontinence pads😤]
If I were you I would get a copy of the Prostate Biopsy report , if that result shows you indeed had Prostate Cancer I would ignore what your GP has told you and continue to get regular PSA tests as a precaution . ...and then get a new GP!
I knew there was some doubt about PC, I had fallen down the stairs in March 2022, with laptop, using my fat ass as a bumper😵, then biopsy in June 2022, those schwannomas formed on circa Dec 2019, okay I was incontinent from then, but those schwannomas/benign tumours had turned gelatinous by the time of the biopsy, I am the ONLY person with Schwannomatosis NF3 certainly in UK, I have a Schwannomatosis personal specialist, but only after this had happened🙄 the Cancer Centre specialist would not have a clue about this condition, and she probably missed about my pectus carinatum and the state it is in, therefore the life changing effect the decapeptyl SR injections had upon my rib cage structure, I am officially terminally ill, as my GP calls me a "one-off"! I blame my local hospital for my present state of health, a Diabetes specialist GP I put on an almost similar state of incompetence, the unusual conditions in my "body" are a distinct disadvantage, the so called Medical "experts" have tried for my whole life to put me into distinct "boxes", I am unique and have proved that my entire life!🖕
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50% 2-3 months out, then consistent slow rise to 75%, a bit disheartened up to 12ish month, then a surge to sufficient for penetration, 
New member - requesting advice for next steps - rising PSA following radical prostatectomy - decipher test score considerations
When to introduce ADT after RP failure
Ugg, can we talk erections
Another Cialis Question
Please Help Explain Results Please help explain Pathology report after Davinci Radical Prostatectomy w/ Extended Lymph Node Dissection 
