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ED reassurance sought pre RP

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Posted 8/27/2021 4:01 PM (GMT 0)
Hi team.

UK based. G3+4, been AS-ing for 5y despite the surgeons' protests. PSA starting to drift up to around 15 from around 11. MRI stable but urinary symptoms developing (71cc gland) so I am very close to having it out. I am very motivated to avoid ED. 63yo and currently in robust health in that area and want to remain so. Surgeon says "you'll be potent in 3 months": long-term urologist more guarded. There is a thread on here from 2019 that suggests a nightmare, as does the UK-based Protect trial. Where can I get real data on what to expect from RP? Should I forget RP and take the risks of the new MRI-guided radiation? (Risk is if it doesn't work you are really behind the 8-ball, and it's not a miracle where ED is concerned, as I understand, although again the Protect trial patient-reported outcomes suggest ED is much less of an issue. Plus of course the risk of urinary toxicity.)

Help!

Thanks in advance

BTW: on my moniker "All progress depends on the unreasonable man" - GB Shaw. And if 5y AS is not unreasonable then I don't know what is.
Posted 8/27/2021 4:17 PM (GMT 0)
Shaw, welcome to the forum.

While a very good, highly experienced surgeon will give you a good chance of avoiding ED, nobody can assure you that you’ll be potent after surgery. And after hearing that your surgeon said you will, IF in fact, he said that definitively, it would raise a red flag for me.
Some of it depends on the skill of the surgeon, as I said, and some of it depends on how close to the nerve bundles the cancer is (not sure if I’m saying that correctly, no doubt if I’m not, someone will correct me.)
If the nerves can be spared, then you have a very good chance of maintaining potency (not guaranteed though) . If , in order to remove all the cancer, the surgeon feels he has to take one or both nerve bundles, then all bets are off.
I would want to know specifically from my surgeon, what % of his patients are potent after 3 months. If he tells you 100%, then run, he’s a salesman. I’d also want to know how many surgeries he’s done with the method he will use on you (robotic or open). And have a frank discussion with him regarding your priorities (get all the cancer vs spare the nerves)

You will inevitably hear horror stories. But there are also good outcomes. I was fine after surgery very quickly, with daily Cialis. But about two years later, I was , meh, meaning ok, but not quite fine.

Good luck, and stay tuned, others will respond soon.
Posted 8/27/2021 4:53 PM (GMT 0)
Getting informed is a great first step. Normally I have no problem recommending RT for most low and intermediate risk guys. That recommendation is a little more difficult with guys having a BPH issue. Although I don’t believe RT will have a negative long term impact to urinary function I don’t think it will improve it much if any. It’s my understanding that radiation kills the cancer by changing the DNA of cancer cells rendering them unable to reproduce. I definitely would seek out experts in Radiation Oncology for their opinion. It might take a couple of RO’s since they don’t all perform the same treatments.

I found the SBRT process to be very easy and effective. HDBT guys report the same thing. IMRT requires more visits but also shows very good outcomes. LDBRT maybe more available and also very good. You should evaluate and explore them all.

I found the personal experiences of this form to be very helpful and it was through this form that I heard about SBRT. It was a relatively new treatment and I did have to travel to find a practitioner. In hindsight I’m very glad I did.

Surgery can have some very unpleasant side effects; but, if you’re urinary function is horrible you should keep it as an option. The surgeons cannot guarantee either sexual or urinary function and I’d be wary of any that do. With surgery you loose two of three urinary sphincters and that can change a lot of things. Trying to preserve the nerve bundles that help provide erections is very challenging. Even if the bundles are preserved the physical damage can make them non functioning. Radiation has little effect on nerve tissue.

I encourage those recently diagnosed to explore all the treatment options and find the one the one best for their situation. Also seek out the best practitioner to get the best results. It’s worth the effort and you want that first option to be a one and done. Good luck and keep posting and learning.
Posted 8/27/2021 5:17 PM (GMT 0)
Thanks guys. I should add that I have bilateral disease but he is confident of BNS. He is also a top surgeon with a global reputation and does the Retzius-sparing. <ADD>He is high volume and very scathing in print of people who are not.</ADD> @Pratoman, yes he said that categorically and I agree it's a red flag. But he does not claim all his patients are potent just that based on my record I should be. We're all an n=1 trial, right?

There is an IMMENSE amount of trust involved and I would run many miles from any therapist I didn't trust. I trust this guy: it's the whole concept of RP I'm not sure I trust...

Post Edited (ShawsUnreasonableMan) : 8/27/2021 11:23:16 AM (GMT-6)

Posted 8/27/2021 5:33 PM (GMT 0)
The odds of retaining potency that a surgeon posts are meaningless; it all depends on your particular case. Pay close attention to the risk factors in your case, such as peri-neural invasion or large tumor volume. If you really want to ensure sexual potency post-treatment, you might need to go radiation, although even there nothing is guaranteed.
Posted 8/27/2021 5:38 PM (GMT 0)
SUM…Just wondering how recent was your biopsy and most recent PSA? Took another look at your first post on this thread and thinking you may actually be in a higher risk category.
Posted 8/27/2021 5:59 PM (GMT 0)
Hello Shaws and welcome. The comments so far seem on the money to me. If your surgeon is guaranteeing potency in three months he is either a liar, a blowhard or a fool. That cannot be guaranteed. Period. End of story.

Frankly 5 years of AS with a 3 + 4 and double digit PSA seems a long time to me. Have you followed a strict AS protocol with follow up biopsies and is your data current from a recent biopsy?

In any case you should consult with RO's to get their perspective of your case and an understanding of the importance you place on undesirable side effects.

Jim
Posted 8/27/2021 6:54 PM (GMT 0)
Thanks again. The biopsy is 18m ago. The PSA is bang up to date. I had an MRI this month and it is stable. But I agree with the implicit suggestion that it is time.
Posted 8/27/2021 9:09 PM (GMT 0)
My oncology urologist told me that since I was in good shape and if I didn't have any ED problems prior to surgery that I shouldn't have problems afterward. Of course, he said there are no guarantees when it comes to surgery.

Well, he performed robotic surgery on me. I went into surgery in the afternoon and released the next morning after I eat a huge breakfast. I had both nerves spared (very important for potency). Three days after surgery I was having nighttime erections while I still had the catheter in (catheter removed at 10 days). I never had any ED issues, even after I had radiotherapy two years later because the PSA became detectable. And for what it's worth, I was fully continent when the catheter was removed, and only experience some very minor stress incontinence when picking up heavy equipment.
Posted 8/27/2021 11:23 PM (GMT 0)
I also have had a good post RALP ED and continence result. That being said, it is incredibly individual all the way around. The skill of the surgeon, your individual anatomy, the actual findings when they get in there--like is the tumor pushing out so they have to "cut wide", and so on.

You have a decent chance of coming through without issues, but there are no guarantees.

I also understand that you are in the UK, so your choices are limited by what the system there says you can do.
Posted 10/17/2021 4:31 PM (GMT 0)
Well team, RALRP it was on Friday 15th October. NSMs initial assessment, T2, "1.9" nerves spared (not 2 because L capsule rough due to abutment). Surgeon, who has seen 1500 prostates, thinks it was a "pus$ycat", but was 1/64" from SVI. so, fingers crossed. And going back to my OP, fingers crossed for E recovery... Thanks for the support.
Posted 10/17/2021 4:47 PM (GMT 0)
Well, now it's wait and see time. That being said, here are some suggestions:

Walk, walk, and walk some more. Put on the leg bag and walk. Take a nap and walk some more. Once the catheter is out, start doing kegals. As soon as you can, get your doc to prescribe viagra or cialis. I personally found the low dose cialis, taken daily, was an excellent choice. It has the effect of increasing pelvic blood flow--so enhances healing.

Then it's wait time. You might be surprised (I was). I had the situation where I was still wearing a thick pad at night, and junior decided to wake up one night, and it HURT. It was tucked down by the pad and couldn't move.

It does seem like continence and ED go together for a lot of men. If you continence comes back quickly, then ED is likely less of an issue. And, if you get any erectile function...that's a good sign. Hopefully you have a willing partner who is willing to help you along.

Best of luck to you
Posted 10/17/2021 6:15 PM (GMT 0)
I, too, was a 3+4. Opted for 45-sessions of RT via Dr. Sang Sim at Monmouth Medical Center in NJ - - met with great success as PSA nosedived from high of 8.7 to (14 months hence) 1.2.

I was an ED victim before my diagnosis. I am Type 2 diabetic and incorrigible when it comes to diet. I also take BP meds (Losartan). I am 72 y/o.

I now have a penile implant. Less ejaculate volume - less mess. Dr. Sim so advised in advance.

Best of Luck, good sir.

NJ Fred
Posted 10/25/2021 7:56 AM (GMT 0)
Bump and kill.

Well within a week I am in @lapilot's situation (admittedly on a 5mg/365 tadalafil regime which I might actually back off on...) Uncomfortable but not complaining and THANK YOU for helping me get over the hump to surgery. Most challenging decision I have ever made. I had to overcome "Choose a treatment plan that feels right for you" because my goodness it didn't. I stressed myself ill with tonsilitis and almost had to delay-only got my fever down with hours to go. Yet here we are. I'm a priapic old goat in the pink of health with decent T levels, and I was lucky enough to have 1.9 nerves spared* but still, there's only one real conclusion which is:

(I'll just take the opportunity to post again something you will hopefully get REALLY bored of me saying over the (gd willing) years.) Surgery has to be GOOD surgery.

*I had capsular abutment and ended up with NSMs but the surgeon had to do a little "shaving" over bumps in the capsule. MRI imaging definitely helped me to surgery on the basis that BNS was likely (but not certain). In a different configuration, and a smaller gland, I might well have chosen radiation so YMMV for NNS and SNS guys although I know SNS in the right surgical hands can end well.
Posted 10/25/2021 3:16 PM (GMT 0)
SUM, well, it sounds like you are (so far) 1 of 3 on the trifecta. 2 and 3 for you are continence and (most important, really) cancer control.

That 12 week post surgery PSA needs to have a "<" in front. If it does, that's as good as it gets.
Posted 10/26/2021 11:54 PM (GMT 0)
People won’t like this response but if your main goal is to avoid Ed then I would NOT do radical prostatectomy. I was 52 and had robotic prostatectomy and had ED for 18 months. Three months recovery is very unusual and thirty percent don’t recover at all. I recovered but then needed salvage Xrt for a later recurrence…all for a Gleason 3+4.

I’m undectable now but I need vardenafil and urethral suppositories for sex. I think about ED every day. I’m 62 and happy I am alive but I wonder if another approach was possible. I would consider cyberknife if I had it over again. Remember, you don’t live forever …at your age you will likely make 80 either way, no matter what you choose. I would go for quality of life.
Posted 10/27/2021 1:13 AM (GMT 0)
"People won’t like this response but if your main goal is to avoid Ed then I would NOT do radical prostatectomy."

i like that answer. i would never recommend surgery to any man with prostate cancer unless for some reason radiation is not possible. i had triple play 11 years ago. i am in remission. i have never once pissed my pants. i can get a usable erection with cialis. no implants, artificial sphinters, no penile injections or peronies, diapers or shortened penis.

they used to say with radiation you'll get the side effects later. hasn't happen for me and recently one of the guys who i view as a successful surgery who is a couple of years behind me reported he is now leaking.

yet we all (at least at first) just want it out. and it's no wonder since our first point of contact, when we are absolutely shattered by the CANCER diagnosis, is a surgeon.

there is a movement to not PSA test younger guys because they could be overtreated! hell they have been butchered by the surgeon so you're better off not knowing you have cancer! wrap your noggin around that!

and thanks for listening smile
Posted 10/27/2021 8:56 AM (GMT 0)
I tried to kill this thread but here we are fighting surgery v radiation so can I stand by?

My handle (modded from ShawsUnreasonableMan) hides the fact that I am actually overly reasonable and see both sides to many arguments. But I do not suffer fools gladly and anyone who blows hard claiming all the answers where really any issue of PCa is concerned is IMO a fool.

Can we all have a little love for each other - this is supposed to be a support forum - and respect for each other's choices, please. Everyone's journey is different - every single man jack. We can have company on a similar road for a while and then bang, one brother takes a stumble with a rising PSA or whatever and goes off on a completely different road. Chaos theory.

So, very individual, and depending on the precise circumstances of each man's disease and the treatments he has access to, the optimum path may well not be your path. We see, every day, the mixed care available: we all grandstand our opinions based on our environment or - perhaps even worse - an idealised environment and expect everyone to listen. The testing thread grumbling on is another example. We don't all have idealised disease in an idealised environment: we have OUR disease among OUR comorbidities in OUR medical environment. And as I post above, the variability of surgery quality between those environments is likely to be higher than variability of radiation quality: an important consideration, no doubt, but not an automatic driver of a "right" answer.
Posted 10/27/2021 12:51 PM (GMT 0)
Welcome to the forum SUM. 🙂
Posted 10/27/2021 3:26 PM (GMT 0)
And, for those late commenters, I believe SUM has already HAD surgery, so going off on how it was the wrong choice is a bit late to the game.

Regardless, I will continue along these lines: You've apparently got the ED whipped for now (is your catheter still in? I hope not), so now we wait to see if your urinary function is tight and whether your PCA goes non-detectable in a few weeks.
Posted 10/27/2021 10:03 PM (GMT 0)
Thank you @halpert!

On UI, the MRI miracle showed a 19mm (3/4 in) free urethra which indicated good continence outcome after RP and was a factor in my decision. Aside from OAB, which is a separate thing and will clear, UI recovery is CRAZY. Catheter out today and saw surgeon for bad news on pathology (separate thread). Leapt out of chair at end: “did you leak doing that?” “Err, no: should I have?” Kegel payback time! Happy! So looks like 2/3 on the fecta: I’ll be lucky with the cancer but MSK gives me 2% PCSM at 10y so let’s not panic…
Posted 10/28/2021 1:10 AM (GMT 0)

halbert said...
And, for those late commenters, I believe SUM has already HAD surgery, so going off on how it was the wrong choice is a bit late to the game.

Regardless, I will continue along these lines: You've apparently got the ED whipped for now (is your catheter still in? I hope not), so now we wait to see if your urinary function is tight and whether your PCA goes non-detectable in a few weeks.

yeah many more unfortunate men will read these threads and i was aware he had made his decision. i'm carrying the message to the next guy, in response to the fellow i responded to. this IS the internet. thanks for understanding smile
Posted 10/28/2021 5:03 AM (GMT 0)
I get it: a bunch of guys on here don't like surgery. Looking at the data (eg Protect trial) I agree and I ran away for what now looks like too long (separate thread). I'm not going to be a surgery advocate.

But: HUGE but.

But when I couldn't dodge treatment any longer it was right FOR ME.

There will be others. Given the history in the States in particular if that is you (and as @F8 says, NOT because you just yell "cut it out": that sort of emotion can distort decisions), don't look at the history and the undoubted victims, look at yourself as the n=1 PROSPECTIVE trial you are. That means choose your treatment for the right reasons. I'll agree, that means not because some uro surgeon stampedes you. (But I've been stampeded by RO's as well: that "opposing camps" thing in the industry is a huge problem, reflected on this site.)

And if those right reasons lead you to surgery (I am tempted to ask to kill this thread, but let's leave it running so you can ask here what those might be) for goodness's sake find the right surgeon. As a FIRST filter, you are looking for multiple ops per week, not per month or Gd forbid year. I did that and my n=1 trial had me adjusting my catheter at night because the SNEs hurt and literally not even thinking about UI (that one is genuinely weird and partly due to my anatomy, pre-known due to MRI, and to physical condition, to some degree under your control, not least through Kegels).

Again, you are a prospective n=1 trial: get the data you need for your decisions. Talk to people, here if necessary but open-minded professionals ideally. Start with your PCP: ask what sequelae they see in their patients etc. That was really helpful to me.

Good luck: we're here to help.
Posted 10/28/2021 1:05 PM (GMT 0)
Whether some want to admit it, there are legitimate reasons to choose the surgical approach. I can think of 2 for strictly medical reasons, and others for personal ones.

Example: A man with a very large prostate who already had BPH/retention issues might be well served by surgery. Radiation, in any flavor, can cause swelling of the prostate, and exacerbate the BPH issues.
Example: A man for whom PC is not his first cancer. It may be that previous radiation therapies have already pushed him into the 'enough lifetime radiation' category.

Personal reasons? They are many. Some may think they are silly, or overstated. Perhaps they are. Some might be:

Practicality: For some, doing 40 sessions of IMRT may be totally impractical. It would have been for me: A 4 hour/200 mile round trip drive every day for 6 weeks--which would have meant 6 weeks off from work--just wasn't going to be practical. Other treatments may not be available except in big city academic centers...and not everyone has the resources available to get to them. So, location, distance, time available, financial resources may all mitigate towards the surgical option.

Systematic situations: For men who are not in the USA, their medical systems may not allow anything BUT surgery for their level of case. Yes, it really does work that way.

And so on.
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