I think this topic is appropriate for this group so I will introduce it today since I can't find a prior discussion on the site. Sexuality is very important to me, an 18 year prostate cancer survivor at age 68. It is also important to my partner. My research indicates high satisfaction for each partner and high success rates, even for those in somewhat poor health (diabetes, obesity, coronary illness, etc)
I have had prostate radiation/s, lung nodule cryoablations, a neck lymphadectomie, (lots of whack-o-mole), ADT, 1st and 2nd generation androgen blockers, chemotherapy, immunotherapy, and BAT. The point is I've had a lot of "stuff" and I'm still a fairly healthy and randy old goat, with ED. BAT makes life a lot more fun.
PCa treatments have always been effective and I switch horses before any treatment appears to be "failing". Even at the lowest of T I have had a libido and now am pursuing a penile implant. I believe that the most important factors in my survival are a great diet, lots of exercise, and a spirit to live.
Does anyone want to contribute to this thread based on their own experience with regard to penile implants?
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Thank you Allen. Getting one and just deciding which one to get. This video was great. Still kicking after true dendritic cell therapy at about 9 years. PSA was 212, and the vaccines removed it from my bone etc. Had around 30 that we got rid of a little over 6 years ago. I'm not great about it, but since I have had a lot of surgery it seems great with me, and my 14 year younger wife. Thankfully I can do it now. PSA is now around .13 with no ADT. It seems to have stayed there for a little bit so no more ADT unless I really need it. Keep your fingers crossed for me.
Hi Scout. My dendritic cell therapy is the same as NWBO in the states. Not sure how they got it over there, but it does appear the same. It appears it helps around 30% of patients. I knew it right away that it was helping me about 6 1/2 years ago. Never should have done, but I accidentally went SCUBA diving right after that. It was truely amazing. I am not cured, but if I go and get vaccines made again my PSA goes back to zero. Sorry I don't check my mail all the time. August 8th will be nine years. My PSA is now .24 on just Zytiga. I did do Lupron twice for a little over a year. I am so allergic to it it just wasn't right for me. It literally almost killed me. So am just doing what I need to do. NWBO has the most experience in with it. APAC Biotech is where I went in India. That's just outside New Delhi.
It took vaccines to do it. It's not like the vaccine that's out there for prostate cancer. They use the tumor to take it to the next level. I know I am super lucky. It's been gone for years from my bones, but if it comes back that's where it would go.
I just was lucky it worked so well. There was no test to see if you would respond to it. Maybe someday??
Zytiga on it's own did not cure me, but before I did the vaccines it was definitely going up. I did have a prostatectomy at four years ago. I have to admit that it did save my life. Glad I got it just before COVID came along. I did that in India too. It was about $10,000.00 for the surgery. It was at an internationally accredited hospital. Dr. Vaid was my oncologist back then. He is still at Medanta. I literally broke my shoulder when I was over there last time. They did it there, and it's about healed now. Stupid, but I thought I should rent a moto, and crashed it on the street. The doctor at Medanta did what you'd do here. It was right at $4,000.00USD. Medical care is very cheap overall there.
I hear you...what none or few of my doctors understood is that to a man salvaging your erectile function is the most important criteria we use when we are going into the final stages of choosing a Dr or facility to treat our cancer, RP or RT or whatever....cancer eradication is a bonus prize...but I personally picked my surgeon for my RP based on his supposed experience performing nerve sparing and had every expectation that I would recover (PD5 or otherwise)...what was never made clear by anyone and what I had to find out by myself after the fact is the damage loss of nightly erections does to penile tissue...I was one year out form my RP, had given up on TRIMEX (hurt like the dickens) and stupidly did not use my VEC (vacuum) systematically...until one day exactly 1 year out from surgery I pumped up the old friend (dont remember why) and was shocked! I had scaring on my left base (pyrones) and a reduction in length (best I could calculate 1/2-3/4 inch)...then I read; then I found out what happens to your penile tissue barring nightly erections and 'exercise' via a VEC or TRIMEX (if you can stand it)...so the short part of this story is that RP or RT that leads to ED leads to permanent damage to your erectile body. It leads to reduction in length and girth...(be ware; double nerve sparing is not protective of penile damage...from what I read).
My plan; wait no more than 2 years from RP. I read that at that time what you have recovered is pretty much it...there is additional recovery that will happen all the way out to 4 years but that curve is pretty flat at the top; not much improvement over the last 2 years of recovery. I will move forward this Dec22 (have my date) with an implant. Once you have an implant the loss of length and girth stops...until then every year you wait you lose both...no one tells men this...honestly if they a good portion of us would do nothing. This is no excuse for not telling us what will happen to us but its the only reason I can come up with to explain the un explainable...
I have been beating this drum with every man that I come into contact with or correspond with to tell them dont wait too long to act. The average man waits 6 years to get an implant...six years...that is way too long in my opinion...dont wait and act and go to a dedicated high volume implanter. 70% of implants are done by Dr's who do 4 implants a year...who would take a car to a mechanic that fixes the same number of cars? TNX
PS from the day I restarted my VEC I have done my 'exercising' (what I tell my wife) systematically 3 times a week...I have a medical grade ($275) battery driven VEC pump regulated for correct pressure. I 'push' my penis and stretch it as much as possible...I follow the directions and do 10 cycles at a time...I use a band to trap blood for no more than 30 minutes at the end of each session...I can report that I regained most of my girth and at least half of what I lost in length...I am told by my implanter that if I 'exercise' my implant that over the next 2 years I can recover a bit more...so not all is lost. But dont waste any more time if your erectile function is important...TNX2
PSS I had an excellent medical podcast with all this data and will share it again if I can get it published...TNX3
“what none or few of my doctors understood is that to a man salvaging your erectile function is the most important criteria we use when we are going into the final stages of choosing a Dr or facility to treat our cancer...cancer eradication is a bonus prize”
What nonsense this is! Cancer eradication was far and away the more important criteria to me, and I am hardly alone. Speak for yourself!
That said, I will likely be getting a implant soon but I won’t until a certain time disease free has passed. Personally I do not want another surgery that gives me the ability to have erections that I may have zero use for if I should have to return to ADT at some point. Getting the implant carries this risk that I’m willing to take but not yet. Strictly my path, as yours is to you.
Just please don’t so blithely assume preserving sexual function is our top priority as a matter of course.
Thank you for your reply, for me and for all men who read it. I have found that most doctors (Uros and Oncs) are resistant to discuss sex, it's as though they're talking to their mother, they look at their feet and fidget. lol. I had one doc fling trimix and a bag of syringes at me and said I could figure it out and left the room. Finding a confident high volume implant specialist has been somewhat difficult, surprisingly the California Bay Area does not seem to have any "high volume" doctors, or ones who are not also selling some snake oil.
RMontana, can you tell me which uro you have chosen, where? Will you travel a distance for your procedure? Very much good luck to you!
RMontana makes great points about the consequences of RP. ‘Nerve sparing’ should probably be regarded as BS and at the least cannot be trusted. Length and girth loss is real along with the very likely ED. Sexual function- wise, it is decimating to many men-more than want to admit it I bet. I would never do RP again if I had the chance.
But that is if I had the chance to do it again NOW. At the time, with my particular pathology, it was the choice I made with eyes open. And yes too many urologists are not invested telling you the truth about any of the sexual consequences most of the time.
However, my top priority was getting the best chance at disease eradication-by far. I had excellent sexual function coming in; my best efforts after RP and the additional treatments have yielded little.
I have heard nothing but great things about the implant.I simply do not want one if I ever have to return to a zero libido ADT state. That would be miserable for me.
As I said I’ll take that risk, but not until I have several years undetectable if I even get there. In the meantime can still enjoy sex with my wife, bringing my 60-70% function and smaller penis (which she prefers anyway, I was packing heat before😀). Besides for us intercourse does not have the same appeal as it once did anyway as my (65 yr old) wife often finds it uncomfortable despite adding estrogen lubricants etc.
All of this a totally personal decision of course. Great luck to you!
Great Info! This should be a post on it's own under "what to do to maintain sexuality when DXed with PCa"
I had the good fortune to be in a relatively new sexual relationship with a woman that really turned me on and I have been able to maintain sexual function ( 3-4 x per week) with no loss in size after 21 months on ADT . No longer ejaculate but have plenty of orgasms. Use it or lose it should be emphasized to all men starting on this journey!
I don't know about implants but I lost my desire soon after going on ADT and forgot about sex completely. I had sex once in four years and did nothing about the damage it caused. I am now back into it and use a vacuum pump daily and just getting into the rings. I tried Trimex once and got priaprism on a low dose. Having a talk with the doc this week. I lost about an inch in length and some in girth. I have regained half the length back and a lot of girth. Whatever you guys do - take it seriously and keep the erictile function up. Start right away.
I strongly recommend the penile implant, your mental health(both sexually and self esteem) will never be better than after the implant. I’m 75 years old and have dealt with PC for 7 years. I’ve been on ADT since having the implant and still had the desire for my wife, we’re both very thankful for the decision to move forward with the implant. There’s very little pain with the surgery and so many benefits after recovery. I also have an AUS as well I. If you’re near the south Florida area I strongly recommend Dr Justin Parker at USFUrology at Tampa General.
First I need to express that my humor may not have been fitting all the cases, for all the men in this forum; it was sarcasm and maybe not appropriate...but my point remains. It especially is fitting for just the men my humor ill served; they present to their doctors fighting for their lives and the last thing on this earth they are worried about is penile health...and there is a but...but for a not insignificant portion of us (and by the Grace of God go I) most will live a long time with this disease; many will die with it. For those men my point is double important...you will not always be in the mode of only thinking of beating the cancer. It will fade at some point and its then you realize no one was prepping you for what comes next; life.
And we will want as much of it as we can grab and sexuality is a big part of life. This surgery, these radiation sessions hammer that function into the ground while we barely know its happening...so notwithstanding my lousy humor my point remains. Our doctors dont care about, dont focus on, do not counsel regarding and would rather not address the need to preserve penile health...continence yeah, they go over that aspect well enough. But from my experience, from the hundreds of professional blogs I have seen from the most prestigious institutions in America, its rare that penile tissue health and the effects of losing nocturnal erections that 1st year after surgery is addressed to the degree and to the importance that it deserves....
I flew from Panama where I worked, sought out a specialized cancer center, interviewed a doctor, asked him all the questions you are supposed to ask (number of surgeries yada, yada) because I had the luxury of thinking I had caught my disease early and had every expectation that I would/ could regain my potency...it was front and center in my mind ALONG WITH treating the cancer at a top notch center...but if it was only cancer I would have gotten my surgery 6 months earlier...I waited especially for and specifically because of the reputation of the cancer center and this particular Dr...this is the good part of the story...
Then the surgery is over and that was it; 'have a good life, see ya...' No follow up, not a call in 2 years, nada...I even had the presence to seek attention of a 'recovery specialist,' before the surgery. No mention of starting Kegels early, of taking PD5 pills before surgery, of measuring myself to see where I started my journey (yeah, that would have been a good idea ya think)...nothing. No mention of the damage the first 6 months of no nocturnal erections do to your penile health, nothing about the importance of oxygenating your penile tissue regularly, not a mention of the real reason you need to inject TRIMIX and use a VED systematically...all of this I found out on my own...the hard way...(not a joke)....
I regret if my humor caused pain or upset; it was not my intention...but what is important is to get the word out...not all of us but some of us, heck I hope most of us will live with this disease and wrench back our lives one bit at a time. For many what seemed so ridiculously superfluous in the throws of our fight for our lives (sexual health) then becomes larger than life and important again...my only point is to educate men even in those dark hours about a better future and one where if they act quickly and methodically they can participate more fully, with better function and live happier lives...that is all I mean...I hope I a lucky enough to be one of these men...time will tell. TNX
PS I will send a private chat to anyone who wants to know where I a going to get my implant done in Dec22...I am not going to a Dr who does 4 a year (they represent 70% of implants)...like I said, would you take your car to a lonely mechanic with empty bays to fix...I dont think so...and you would let a Dr operate on you when he moonlights implants? Not me brother...TNX2
Hi back, I certainly didn't hear any sarcasm, and I have my share since we are just expressing similar experiences. I enjoy humor. I'm glad I opened up this dialog and for men who are reading, would be happy if this is helpful to them. RMontana, please direct an email to me, if you can and will. best to you.
I'm 55 years old and had been impotent for 4 years following nerve sparing RP. Just had a Coloplast Titan IPP installed September 1st 2022. Dr Kohler at Mayo Clinic was the surgeon. A painful four week recovery should be expected. I was sent home after surgery with the device partially inflated and told to leave it like that for 3 weeks. This was awkward to say the least. I am 2 months out now and am learning to appreciate the device more. Still nothing like the original equipment, but it's functional. I received 18cm cylinders including the rear tips. My advice is to temper your expectations and don't think that you will necessarily look like most of the after surgery photos. Good luck and reach out to me if you have questions I can help you out with.
I’m on the other end of interest here but will follow you to see what feedback comes should I flip back to base camp. Also I may come across someone interested or someone themselves needing info on this.
It's not clear what your comment means, basecamp? I recommend franktalk.org, focused on ED issues and solutions, there's a section on implants. Many success stories. Since I posted here 9 months ago, I went down that path and am satisfied.
thanks, I’ll check it out. I realize it sounded cryptic after you made note of it. I’ve become so accustomed to chat talk with those who know my story and just forgot where I was making comments. It looks like I’m out of step with the conversation so I’ll take a step back further. be well.
I have a friend that had the implant and after the surgery he found the doctor ruptured his prostate with a Gleason 9. Now it has spread to the rest of his body and metastasized. His PSA is 1500 with bone mets.
PCa treatments have always been effective and I switch horses before any treatment appears to be "failing".
Your statement interests me , would you please elaborate... Better yet maybe fill out your profile so we can all see and have a permanent record of your treatment history.
Did you do this based on Gattenby's "Adaptive Theory"?
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