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 30%...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.
surgeo.com/blog/prostate-ca...
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 fibrosis. 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. Heck, at any time they could have done an MRI on my erections using TRIMIX and found that I had developed Venus Leak; my erections were never going to come back no matter how long I waited! 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 and there are some men who report the same treatment that had but had normal recoveries; good for them. 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.
pubmed.ncbi.nlm.nih.gov/304...
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
PS its now been 18 months since my IPP was placed. The implant works and the shape and rigidity of the implant when inflated is great. My only regret remains waiting; I lost a 1/3 of my length, but here is the kicker. I had no idea that the length of the penis is equal to its girth, or circumference...yeah! So if you lose 1/3 of your length you lose the same girth, meaning in my case a 50% reduction is size. Now, men are criticized all the time about thinking with our 'D#cks.' OK, fair enough, but I want just one of these 'smarter than smart' a-lacks to step into my shoes. I want to see them lose half their normal erections and see how it feels; it sucks. AND in my case it was mostly if not totally preventable, had I acted quicker, had I had Doctors who gave a 'sh#t' about anything short of saving my life. Yeah, that goal is the one that matters, but its just not good enough anymore. Medicine has advanced, most men will live long lives with their PCa and our practitioners have to be held to account for treating the 'whole man,' not just his cancer.
None of this matters if your sexual function was low before surgery, but if you had a good sex life prior to PCa and you have any expectation of recovering it, then you better pay attention to what will happen to you as no one else will...
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