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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nelsoncobra
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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.
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.
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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, 
MRI prior to HDR Brachy and HDR intensity.
PSA holding low!!
Introduction and asking for help interpreting latest scan results and thoughts on future treatment plan please.
