I Simply Don't Understand...

[Handdrummer777]

I love this group and enjoy contributing to it. Yeah, I've been a bit of a one-trick pony, as anyone who's seen my posts can attest to.

I keep harping on the necessity for utilizing either my own ED device the Loop, or especially now, the new dynamic duo, FDA-tested Giddy and Xialla, for effectively treating ED in most cases.

I call them that because whatever the reason, planned or unplanned, Giddy and Xialla go together like Laurel and Hardy, like Butch Cassidy and the Sundance Kid, like Aragorn and Arwen. Or, just like peas and carrots.

So WHAT don't I understand, in all seriousness?

I have been reading the many unfortunate, heart-rending outcomes from RP. These are guys who do not recover enough erectile function and/or enough sensitivity, and who Jessqrepresent the solid majority of men who undergo surgery. With these kind of results, it's no wonder that libidos take a beating.

Which leads me to ask, bluntly, Why in hell would any man choose surgery over radiation?? Yes, there are surgeons who have done thousands of these operations. And your odds improve somewhat with them. But until any surgeon opens up the area, the amount of nerve-sparing achievable is essentially unknown.

So, with all the advances like robotic-assisted surgery, still the aggregate percentage of potency preservation with RP is a whopping 37%. This is not a very encouraging percentage.

SURGERY --

Look at what you have to put up with in RP to "get that cancer outta there":

1). Immediate incontinence, usually weeks to months to recover from, with Kegels and so forth. The urethra has to be cut and reattached, shortening your penis by, in some cases, up to 2+ inches. Yike.

For someone who's 8" that's not so much of a problem, but for a man with 6", that could be a big, depressing deal to have to face life with that much of a shorter penis -- that may or may not recover erectile function.

2) Immediate ED, which needs serious penile rehab assistance expertise to recover. Even the best nerve-sparing surgery still renders the nerves inoperative for a time. They go into sleep-shock.

So you now have to deal with, I most cases, a number of months before whatever nerves are left wake up and enable substantial erectile function to return...if it does at all.

3) As is well-known, anyone who gets the surgery also has a substantial chance -- 30+% -- of needing salvage radiation anyway at some point. And ADT, which I've written about extensively, is a good possibility also. That's a beast unto itself.

It's dismaying that up to 80% of men who go through hormone therapy fail to keep their erections going during ADT. With predictable results post-treatment -- loss of libido, penile tissue damage and shrinkage, and permanent ED.

RADIATION -- especially the newer SBRT and TULSA Pro -- doesn't disturb the nerve bundles. Depending on the type, today's radiation delivery systems effectively target the cancer while limiting the damage to nearby organs.

There are late-onset ED problems that can show up for 50% of men receiving that treatment in the first two yrs after RT. So that's a risk. It's been a year since my RT was completed. So far, abd using the Loop to preserve erectile functioning during 18 months of ADT, things are looking good. I did not have to deal with incontinence or immediate ED from the primary procedure.

A huge relief!

The downside of radiation treatment is that there fewer salvage options. But they are there. Salvage surgery would be non-nerve-sparing, so that would be a terrible outcome.

Anyone considering RP had better look again!

Unless for medical reasons RP is unavoidable, PLEASE think about switching your plans to radiation! Penile rehab, armed with the fabulous new FDA devices and/or the Loop, can handle that in most cases.

OK, men! I've spoken my peace on this issue. Thanks for the support you've shown me on my PC journey forward.

[JohnZi]

Thanks for putting the discussion out there so well, Handdrummer! RP, biochemical reoccurrence, radiation and ADT over the last 3 years has been one heck of a journey. In the long run, in spite of severe ED and excruciating hot flashes from treatment, I *am* alive, and my PSA is back to 0.00. Fortunately I'm married to a wonderful, understanding guy who has been a gem readjusting to our intimacy issues through all this. But were I a single guy in my 50s or younger, quality of life issues would be even *more* of a challenge and a threat to emotional/sexual functioning and self-identity. In any case, as we all know, no one gets out of a prostate cancer diagnosis and treatment unscathed, and there are SO many moving parts for every unique person to consider. Again, appreciate your contributions and support, HD.

[Handdrummer777 in reply to JohnZi]

You are very welcome. Doing what I can to express my dismay at such high negative outcomes for RP. I personally would have faired poorly psychologically, and still being in the toxic tail-end of a hetero relationship, that would have been very difficult to manage.

Have to admit, changing to gay and finding a new love relationship certainly does the libido a big favor!

[Handdrummer777 in reply to JohnZi]

You are so blessed, as you say, with a wonderful and understanding man as your partner. That makes all the difference in the world.

You've been put through quite a lot, and your spirit in this is a testament to the power of love to see us through trials and setbacks.

[LoganMA]

I just received my PC diagnosis around Oct 26th. I've been torturing myself on which way to go for the very reasons your post here goes thru. I'm also on a regular facebook group for PC and it does seem like, for the most part, the RP's go through so much. I'm not quite 6" now, so taking away that 2 inches would be a lot for me! I'm "struggling" as it is! FWIW, it's almost 6 weeks since my fusion biopsy, and my semen finally was clear! So hard to get intimate with my partner when I have to be worried about it being bloody again. So that was good to see it clear. Because I take Flomax most of it goes the "other way" so not much comes out. But it was discouraging to see, #$@k it's still bloody. That issue looks like it's behind me now, yay! You've outlined both procedures very well as I am reading reliable sites on the pros and cons of each method. The size of my tumor made SBRT not an option, but IMRT was my other choice besides RP. For the exact reason you outline above, salvage RP (salvage, wish they had another word for that!) is difficult at best. I'm probably not going to do either until January at the earliest anyway. Thanks for a thought provoking post and it's no wonder I've been so angry lately. While of course I'd be thankful if I was cured, as you say the percentage of recurrence is relatively high. That's what keeps me on the damn fence!

[spencoid2]

Ideally a patient's uriologist oncologist and others will, along with the patient, decide the treatment that offers the best chance (this is a chance game) of cure or treatment with the fewest acceptable side effects. It is a very difficult decision, in many cases. There are statistics to consider but not every case has a broad enough statistical base of similar cases to make a decision clear. Some times it comes down to a personal choice based on avoidance of options not considered tenable.

[Handdrummer777]

Make sense. I just for the life of me don't see any upsides except the prostate is out.

RP downsides clearly outweigh those of RT, in many, if not most, cases.

Why opt for damaging the nerve bundles, creating incontinence, creating ED that has almost 2/3 chance of no recovery, and a shorter penis to boot??

Please extoll the virtues again of RP? Yes, there is some chance of late onset ED from RT. I'd much rather take my chances with that!

Spoken my peace, for now.

I wish you and everyone a happy and blessed Thanksgiving!

[Handdrummer777]

Sorry, I opened with "makes sense", not an admonition for you to "make sense."

[SpenceNYC]

So, I think there may be some unintentional bullying of those of us who opted for surgery. Also, I remember my father warning me about snake oil salesmen, and while I give Handdrummer777 the benefit of the doubt, I also wasn't born yesterday.

[Handdrummer777 in reply to SpenceNYC]

I hear your concern about unintentional bullying of those who chose surgery over RT. I may come off as somewhat condescending to those guys.

It's just such a heart-rending concern to me, to see so many negative outcomes from RP, and the depression and anger and lower QofL that can go with treatment regret. My heart goes out to everyone struggling to recover erectile functioning after their treatment.

It's gratifying to see that yes, there ARE good outcomes from RP. I just wish there were more.

As you probably know, my main focus in posting has been to not only share my own experience of my own PC journey, but more importantly, to alert men on ADT that using a device (my free Loop, Giddy or Xialla) is probably going to be crucially necessary (along with daily tadalafil or sildenafil) to keep erections going. The effect is to preserve potency, most of it, and prevent most shrinkage -- in the no-T environment of ADT.

I've been in the very unique position of knowing how awesomely helpful a device other than VED can be. My Loop device continues to give me reliable erections, in this home stretch of ADT.

Thus, I know that for most men who are forlorn in their continuing ED situation -- especially those single guys without a partner's support -- use of an ED device (I'll have to include VED for now) is vitally necessary.

I think that many guys, whatever their treatment situation or outcome, when they get a hold of one or more of these beautiful, simple devices, they will be pleasantly surprised. Maybe even thrilled. The bloodflow issue is handled well.

And these new devices, I believe, will become the last line of effective ED treatment prior to the implant.

"Use it or lose it" is very serious business for our group.

I wish and hope that everyone who is struggling with ED can find solutions with the expanding array of options now available.

Successful erections boost libido -- even with no T in your body with ADT. My experience, I believe, proves the truthfulness of that assertion. I have a healthy libido, in spite of no T.

Truly, I hope that once we start hearing from guys who are pleased with what the devices can do, my intuitions about their potential will be borne out.

Best of luck to everyone.

[Handdrummer777 in reply to Handdrummer777]

I do admit that turning gay in the midst of ADT does have a beneficial effect on libido.

[wallygator]

I opted for RP and then had BCR and IMRT. As stated earlier, I was fortunate in that I regained the ability to have an erection and incontinence was never a problem, so my outcome could have been worse. I thought I should point out that RT carries the possibility of secondary cancer that RP does not. It's a small possibility, but a possibility nonetheless.

Wally

[Handdrummer777 in reply to wallygator]

I'm so glad for you! You came out ok is a joy to hear. Thx for that point about the small risk of secondary cancer with RT.

I would still recommend trying out a device. Giddy and Xialla actually, by happy chance, dovetail positionally -- so they can be a powerful ED duo.

Originally I found the Loop to be like an awesome sex toy, sometimes enhancing erections up to 5% beyond what I ever experienced before.

So, when I started ADT, I had confidence -- in the midst of being scared about the whole PC situation -- that I could rely on the Loop to get me through ADT. And it has done just that. I am extremely lucky to have stumbled upon such an incredible performer as the Loop.

Good luck and blessings to your surgeon who shepherded you through RP.

[mkljajic]

Are you getting royalties from Giddy and Xialla?

I strongly feel, you are their promoter.

Agree about RP. Poor outcomes in high percentage of patients who undergo this route, myself included.

MK

[Handdrummer777]

A fair question, but No, absolutely not. I'm not a shill for those two devices. I do offer, for free, instructions I wrote back in April, before I knew of Xialla and Giddy coming out, for my Loop device which you make yourself.

And based on my experience, I am very excited for guys (including me waiting for my Xialla) to try the Loop, Xialla and Giddy. I just know from experience they will work well for many men in different ED circumstances.

Practical point: there is a long period of back orders for the FDA devices. But anyone here can read the instructions and begin using the Loop TODAY.

I am tutoring by text another member with severe ED, having had RP, salvage radiation and ADT. For him -- and he has the support of a wonderful partner -- it's a process of healing and reviving the libido (i.e. waking it from its extended edition slumber) just as much as restoring erections.

Just sayin' about those Loop instructions for anyone wishing to avoid delay in employing aggressive penile rehab.

[wallygator]

You do seem to be "over-promoting" these things. I think we get the message. Can you post without mentioning the Loop, Giddy, or Xialla? Your posts read like an infommercial.

Wally

[Handdrummer777 in reply to wallygator]

Fair enough. Yep. You're right. Maybe I was so wrapped up in being "helpful" that....you're right!

Thx Wally

[wallygator in reply to Handdrummer777]

Thank you. I do believe you have useful insights and I look forward to future posts. Happy Holidays.

Best wishes,

Wally

[Handdrummer777 in reply to wallygator]

Thx! You too. We're all in this together.