Well, as with all things in life, hindsight is 20-20. So it is with my experience with my IPP (inflatable penile prosthesis) after 2 1/2 years of PCa treatment. I was operated on in June, 2020, had IMRT RT Radiation treatment ending May, 2021 and finished a total of 21 months on ADT this past December, 2022. At ever step of my treatment I focused on saving my Life, but planned on getting my urinary and sexual function back. And that ‘order’ of get treated-get dry-get hard (sorry) is the current SOC (standard of care)...I now see that this was a mistake. I should have ‘stacked’ the three goals, not put them in series. I had always hoped that natural recovery of my erectile function would/could happen; I was told it could take up to two years. Now I see that for me and for many this was a pipe dream. Unless you have double nerve sparing (with high 90% plus saved) and are young your natural function is most likely not going to come back. Also, I should not have waited 2 1/2 years to get an implant. My story;
I had recurring PSA of 0.13, 6 weeks out of RP which spared my Left side nerve bundle (no idea what percent as the Dr never recorded it). After surgery I did not react to PDE5 Inhibitors (none of them worked). I then took ADT Lupron for 6 months followed by IMRT 68Gy treatment...I then thought that I needed to wait at least two years to see if anything came back...but now I know that nothing was ever going to come back. Calmer heads should have counselled me that either with single nerve sparing and/or with IMRT radiation I was never going to get a spontaneous erection again. That 'sit down' should have happened before I received IMRT.
Had I known that I would have opted for an IPP penile implant right away, right after surgery. This would have preserved my penile tissue and provided an erection much closer to my natural one. Instead I waited. Just 6 months of ADT did a number on my penile tissue and I had fibrosus and scaring develop over the subsequent 21 months. IMRT may have 'toasted' the base of my penis as the radiation field hits that area of the pelvis. The result was that my IPP needed to be shorter and smaller than what I would have received, had I moved earlier. Instead of the normal width implant I needed a ‘Narrow Base’ implant with reduced diameter. To top it off the 2 ½ years led to a decrease in penile length of 20%...and dont let anyone tell you your penis is not affected by lack of nocturnal erections. You will lose both length and girth the longer you wait. So that is my situation…but its not all bad.
I have saved a lot of my penile length and girth by daily use of the VED during my 30 month ‘waiting’ period; if I had not done that I would be in a lot worst condition. I have good girth and rigidity and the IPP will definitely do the trick. So I don’t mean to make light of the positive side of my experience. Only that, should I be able to do this again, I would have moved to get an IPP before my RT and definitely prior to starting on ADT. There is medical precedence for this and Dr Eid of NYC fame is no slouch in this area of knowledge.
Sadly we don’t have any literature on IPP’s and their ability to withstand RT (see reference). But there is plenty of literature on what happens to your penile tissue after ADT, RP and RT. Looking back had I received RT with my natural, pre ADT, post-op-penis IPP in place I would have had the implant to hold the line against atrophy, scaring and fibrosus. The worst thing would have been a revision (replacement) of the IPP installed. Note, as posted here one of our Brothers received his IPP before his RP and then prior to sRT! So, what Dr Eid states is in fact possible!
I also did not have the counseling I should have had when I started my PCa treatment. A good medical center would have presented me with a Surgeon/ RO, plus a continence and ED specialist from the get-go. They would have followed my case and would have sat me down at the point where it was obvious that I would need IMRT radiation. I should have been told that having had unilateral nerve sparing, plus NOT reacting to PDE5 drugs post-op was a strong indication that my natural, spontaneous erections were never coming back. I should have been advised to consider an IPP right away to preserve what I had…’woulda-coulda-shoulda’ strikes again. The world is full of these situations and PCa treatment is no different.
I share my experience for what its worth. None of this may apply to you. But its my story and if it helps a single man out there get back more of his natural function then its worth the bother of publicizing my toils and follies…
If you do wait the literature also says there is no difference between IPP for men who have had RP or RT and those that had IPP’s due to other diseases, i.e., diabetes or pelvic injury; the study is provided.
But it’s a 3 year look ahead and only looks at revisions (need to re operate). It does not include any of the issues I address here, which are preserving more of what the anatomy entered your PCa treatment with and optimizing a IPP should you need one. Hope this helps someone. I will report on my IPP as time goes on; its 3 weeks and counting. Rick
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RMontana
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It is unfortunate that the information / communication is not there for us guys. My wife supports me all the way and will tell you that her experience with breast cancer - surgery and reconstruction was a polar opposite experience than mine I was fortunate to fire my surgeon and find a younger urologist that encouraged me to be all I could - however - it was still up to me to get the information and act on the information. 2013 - prostectomy - 2014 - 39 radiation treatments - preronies disease - 2015 - implant - 2016 - ADT - 2018 - implant repair - 2019 - bone metastases - 2020 - Zytegia - 2022 - chemo 2023 - Pluvicto Positive results 2015 - 2019 then as more extensive treatments were prescribed the interest has completely vanished. My advice - cancer sucks - but with a supportive spouse and a good team - live life at its fullest.
How long was your recovery form the IPP? Also, how do you recommend finding a good IPP doc/surgeon?
I'm glad you published this. I would've waltzed into RT without even thinking of an IPP beforehand. Since there's a 95% chance that RT is when, not if for me (and likely this year), I'm thinking I should talk to my doc about doing an IPP sooner rather than later. It's been 15 months since my surgery and if there's been no erections yet, it's probably not going to happen.
Some things I dont know; did you get double nerve sparing? Next, what percent nerve sparing did you get? Then, if you get sRT (salvage) all that work is gone, done...I dont think your nerves survive and even if they did you would be like Radiation patients who opt out of surgery. They get ED in 3-5 years after RT...so yes, after your sRT you can pretty much write off natural erections.
Recovery is not what they tell you. First, pain is not the issue; its minor really. You are numb and lose sensation in your penis. AND I can tell you all the Doctors on line tell you there is absolutely no loss of either...this is not correct. So, how long does it take to recover? Depends. If you are a diabetic with basically healthy, normal tissue your recovery of full sensation (i.e. orgasms) is fast...if you are a PCa patient with RP plus sRT your recovery can take 6-12 months...yeah. I am 4 months post IPP and I cannot have orgasm and my sensation in the head is not what it was before surgery...come to find out this is normal...of course found out after the surgery. I also corroborate this with other men who have had surgery and are PCa patients...you lose sensation and it comes back.
Who to operate on you...get this. 70% of IPP's implanted are done by Dr's who do 4 a year...read that twice if you need to. Question. Would you take your car to a mechanic who fixes 4 cars a year? Dont answer that...you need to find a high volume implanter who does hundreds of these damn things and specializes in this...this is baseball with one up-at-bat, where you get one swing...have I made my point? Dont screw around with a Dr locally who does not do this for a living. Also, you have two approaches to an IPP; infrapubic or penoscrotal. One comes from the top of the penis and the other thru the back via the scrotum. I opted for the infrapubic, from the top. I would not do that again as I had bottle neck peyronies...I should have gone in from the scrotum...am convinced my continued numbness and loss of sensation was a consequence of having to clean out my peyronies blockage on my Left side...but my nerves were not cut. They are intact and will come back; must be patient. If I had to do it over again I would have gone to Dr Eid in NYC...he only uses penoscrotal approaches and seems to do thousands of these procedures and has a pretty good web site...check him out. But if you do it locally, again find a high volume implanter. My Dr was Dr Perito our of Miami and he did a great job; my penis looks great and is growing with his 1 year recovery exercise routine which works...check his web site out but specifically listen to this podcast...its talking to you regarding when to get an IPP...Brother, after sRT and especially if you use ADT, natural erections are gone and each year you lose length and girth and that will bug you...it did me.
But use your VED aggressively and do this at least daily...remember, you used to get 3-5 erections every night; those stopped the morning after your RP and for the first time since you were 3 years old your penis was not stretching and being oxygenated...NONE of this was explained to me by either my surgeon or the #$%*#&$ Dr ED Specialist who I hired before my RP specifically to keep me out of trouble...no one mentions this stuff as they are afraid if they do men would freeze, do nothing and die of PCa...well, that is #1 stupid but also happens to be a choice the patient can make (thought we were all adults)...
...Anorgasmia...yeah...this podcast also is there as a 'cover my ass' podcast that states possible outcomes from surgery...just so we know going in what can happen. BUT its worth it. The implant really works and it saved my penis which was shrinking and deformed via peyronies. I would do it again and would recommend it despite the risk...heck we have risk at every corner of every treatment. Check this out;
Good luck...I am waiting for a bit before I publish my update to my IPP and yes, no one talks about this. I find that the majority of the 'get quick,' 'screw like normal,' testimonials must come from men who did not have PCa, RP and sRT...these men had natural erections until diabetes or some other ailment took them away; BIG, HUGE, FUNDAMENTAL difference...but again, worth the effort and risk. Rick
PS before I go...you mentioned that your PSA came back down a bit...if you got nerve sparing make sure your PSA is not from a 'Benign Margin. ' Yeah!!! Who knew! Prostate tissue is left behind when nerve sparing is done and high nerve sparing outcomes leave more tissue behind...check out this podcast at Min 6:35 and 23:30...see if your PSA is not coming from Benign Margins...then get a PSMA PET before you get sRT, even with low PSA...you never know. Rick
Again, thanks a ton for all the advice. This helps enormously. I’m continually amazed by how much we’re not told before we jump out of the plane. I understand they’re busy, but how much effort would it take to send an email that says “watch these videos”. I think you’re right, they’re worried we’d opt out if we knew what we’re in for but that’s the whole point of informed consent, isn’t it?
I don’t know my percentage of nerve sparing but will ask my urologist in a couple of weeks. I didn’t even know it was a percentage. I thought it was pass/fail.
Dont forget (as you are drinking from a firehose right now) that you can slow down you PSADT by 86% or more by taking Sulforaphane...this is for real. This compound had been studied over 2000 times and its all over the place, MINUS any of our surgical or radiation centers...where vitamins still dont matter. But I believe this is for real...go back and read my messages to you. Think about starting a regime as I do daily of taking Liposomal or Stabilized Sulforaphane (dont be fooled) AND perhaps growing your own sprouts...I think this will work. Heck, if you can delay or avoid radiation your are better off...if you need it fine, then deal with the outcomes...good luck. Rick
PS if the medical community is afraid of telling men of the consequences of this treatment then the conundrum is whether that is because of a concern for our health, or something else...hmmmm. Rick
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