55 years old and considering nerve-sparing radical retropubic prostatectomy (RRP)

Hi everyone - I'm back with a new thread.  A brief history of my information-gathering journey after getting the news that I have PCa:

Definite rollercoaster ride - my initial reaction was for surgery to get this thing the hell out of me, to deluging myself with data to the point of paralysis by analysis, which included all of the side effects of surgery that scared the living hell out of me, to then thinking (and now thinking that perhaps I was 'hoping') that Brachy was the right thing to do - to now trying to get my head around this latest turn of back to surgery being the option based on input received from my urologist that did the biopsy, the 2nd opinion from Dr. See / open surgeon, to a third opinion from Dr. Lawton / head of R.O.

My issue is this - at the top the potential SE's of surgery really, really bother me.  I feel like I'm right smack in the middle of what my  decision should be:  because of my age and health I'm a great candidate for surgery - with the counterpoint being that because of my young age I don't want to have to have a QOL that sucks.

More details regarding Dr. See, who I am considering going to for Nerve Sparing open RRP if that's the path I decide:

> 1,000 RRP's performed

Average time in surgery is 2-3 hours

Need for transfusion <1%

Average time in hospital post-op is 1.5 days

Continence rate is 97%

No ED issues = 80% if both side nerves are saved, 40% if one saved, 10% if neither saved.

I have a call in to get absolute clarification on a few things: how many of the RRP's were nerve sparing, defining continence rate - is continence defined as no pads, no dribble, or?  Same goes for ED issues, does this mean 80% no ED with no help, ie drugs, etc., or?

I do realize every case is different, but I am off to get the level of specificity that I feel I need before I make my ultimate decision.

For those of you that have seen my posts before I have updated my signature line to include MO, NO, negative DRE's as well as gland size 40 gm and TRUS volume 22 gm.

You are asking all the right questions about surgery. I had open surgery, and never regretted it. In 2008 in my area, Robotic Surgery was too new, only 15 had been done for prostates, and I wasn't willing to travel 125-150 miles to go to Atlanta or Charlotte. I had a good relationship with my uro/surgeon, and he was highly skilled with open Surgeries. Plus, due to some unseen anatomy issues unique to my body, a robotic surgery would have had to been aborted had it been attempted.

In the "old days", blood loss was an issue, it almost never is anymore. There have been a couple or so guys here at HW that had blood loss issues even with robotic. Due to complications, I was in the hospital for 4 1/2 days, but I had the insurance and didn't mind it.

A good open surgeon will still make a strong case for the tactile feel of having his hands inside you. Robotic surgeons push the magnification advantage, but in most hospitals an open surgeon has adequate tools for that purpose too.

As far as openings, you choose one larger one with the open, vs. several smaller ones with robotic, I didn't find that a major issue, as both are still major complex surgeries.

Now to the side effects, I hate to say this, regardless of predicted outcomes and odds, there is and always will be a gamble, no matter how great a surgeon is. Each person's body is different, and different outcomes simply happen regardless.

I had the left nerve bundles removed on purpose, and the right were suppose to be removed, but due to the narrowness and extra depth of my prostate bed, the surgeon (even with open surgery) could not find room to remove them. On my surgical report, the right side bundle was listed as "intact but damaged". And to show you how things vary, I never suffered a day of ED. I had my original cath in place for 63 days to allow extra healing to the bladder neck to urethra connection, and I often wonder if that is what made a difference, or did I simply win the prize that day? My surgeon will not take any credit, he was too modest for that, as we expected me to have full ED with a wide margin operation. I was having full errections on my own even while on the catheter (not reccomended, it was kind of scary to be honest).

As far as incontinence, I can't give a good answer. I had the opposite problem, I had constant stricture issues that kept me blocked up. I was hardly ever off of a catheter for know if I had incontinence issues or not. I did go for 3 months, about 6 months after surgery, with no stricture issue ,and I had no incontinence issues at that time. I did wear a pad for about a month just in case, and used depends at night, but they were never needed, don't remember every spoiling a single one.

My point, in the end, you will have to make the call yourself, have faith in the doctor/surgeon you choose, and hope for the best. There are men here, that went to a top "ten" surgeon with nerve sparing ops and are still dealing with either ED or incontinence issues 2 years out, and there are guys that have the op, and only deal with minimal issues. If you are looking for a guarantee, unfortunately, you aren't going to find one.

I think your age and stats make you a great candidate for surgery. I was 56 at the time of mine, and was generally in good health. I never had any urinary issues, no prostate issues, all negative DRE's, etc, the only signal was a fast rising PSA for several years after I turned 50 and started getting PSA test. I never had to get up at night to pee, and could hold a full bladder all day if needed, and never had a trace of ED issues before my dx.

I know what you are going through is tough, and its even tougher knowing that you alone have to make the ultimate choice. I do feel you absolutely need to be treated, but even now, don't feel rushed or intimidated to make a fast decision.

We tell men to study hard and long, choose wisely, then go for it, and at that point, you simply have to trust for a good outcome. It doesnt' get any better or worse than that.

Wishing you the best still,

David in SC

Thanks for being here again guys - really appreciate the feedback, it helps for sure talking to guys that have been there, done that.

If I step back and rate what is important for me with regards to my diagnosis of PCa it is, in order - living long enough to enjoy a long retirement, being continent, being able to be sexually active. If I own up to that it seems like surgery is the "best" option, but again, I'm only 55 years old and in phenomenol health and really don't like the thought of wearing diapers and not being able to have sex with my wife - which is why I continue to struggle with my decision. . . . .

At this point in time part of me says to make the god-darn decision already and beat the crap out of all of this; the other part of me says to seek out a Brachy expert for yet one more opinion. . . .

Yooper, I hated the idea of surgery. This was the first operation for me in 65 years of living, and I absolutely dreaded it...until a few days before the surgery when I found I suddenly completely accepted the idea and found an absolute sense of calm about the whole thing.

Unfortunately, you can study this to death, you can play all the odds, you can make all the "right" decisions, but every case is unique and your outcome may be better than you anticipated, the same, or sometimes worse. There are no guarantees. You've done your homework probably better than 99 percent of men who find themselves in this predicament, so you have a real edge there when it comes to making a decision, but your exact outcomes in terms of continence and potency just can't be known for sure until you get there.

Like so many guys here, my priorities were: (1) get rid of the cancer (2) regain continence, and (3) maintain my sex life, in that order. Well, numbers one and two seem to be doing OK, and number 3 is working out, too, in spite of serious ED issues. There's more than one way to skin a cat, and my wife and I are both enjoying what we have.

I wish it were possible to treat prostate cancer without the risk of side effects, but it just isn't. No method is without the risk of side effects, but I have to say I'm happy with the treatment I received and would do the same thing over again if I had to make that decision again.

Don't let yourself get locked up in what some here have called "analysis paralysis."  And create a mindset that once you make the decision, go for it and swear  you'll never look back and second guess it.

Yoop...with this much indecision what's to be lost by seeing the "expert" in brachy?  If that opinion comes back like the others then at least you will have consensus.  If not, at least you will have options.

Of course your priorities are right, IMHO...and those are the ones for most of us.  But for me, with over 10% of surgery patients suffering long term leakage issues and with over half suffering ED and with the cure rates for radiation treatments as good as for surgery then my decision became apparent.  Please don't think I am trying to talk you into something because I'm not.  I just remember the back and forth questions I had and the importance that QOL was to me....

Jim

Yooper:

having an experienced surgeon definitely helps n improving the odds of avoiding SEs or minimizing them. But in no way does it assure that these will be avoided. I was one of the lucky ones that basically had no SEs.

Being concerned about SE because of your young age can also be viewed the other way around, being young young is another weapon in recovering quicker and better.

There are many who have no side effects, some that have some, and some unfortunate guys that seems to get them all and for extended periods. None of us know what category we will fit into prior to surgery but their are various indicators that can help in achieving high success.

I remember being concerned about SEs but I had full trust in my surgeon and was really mainly concerned with a good pathology report post operation.

You don't sound 100% convinced about surgery, you should probably explore seeds and radiation a little more in depth until you are 100% sure about surgery.

I chose IMRT with brachy for 5/16 positive cores. John Sylvestor has data showing intermediate risk cancers do as well with brachytherapy alone vs. IMRT and brachytherapy. I had Dr. Sylvestor do my brachytherapy, and did my IMRT locally.

I chose radiation over surgery for the reasons you stated. My toughest decision was whether to do the IMRT. If I had it to do over, I would have only done the brachy......I think....

See a brachytherapist that has done at least 500 cases. There are quite a few that have done several thousand.

Good luck

Paul

The only thing I can add is to pin down the doctor's definition of what ED is so your expectations are in line with the medical definition.

I thought (before my operation) that not having ED meant you would return to the same performance level as prior to the surgery. That was incorrect thinking on my part.

The medical definition and the practical definition are not the same so a patient's expectation of not having ED and a doctor's may differ widely. I am considered a 'success' regarding ED by the medical definition and by my doctor, but I would say I am a 90-95% of where I was prior to surgery.

Good luck!

Dan

UP:

Good luck.

I sent you my list of questions. Hope they made sense.

Mel

If you are really having a difficult time making a decision a good option would be to have a consult with Dr Barken (pcref.org). Dr Barken is a PC coach that has no skin in any treatment option and will review your particular stats and guide you through the pros and cons that are particular to your individual situation. If more information or testing is needed to make a decision he will also recommend that. He works for you and not for any doctor or hospital. He is in San Diego, but I would expect he does phone consults. In your case it would be money well spent.

John T:

I think Yooper said he was advised against it by an expert RO.

Maybe Yoop can mention that again and indicate why it was contraindicated

Mel

I am three months out from Robotic P.  I had good path and first PSA is undectable.  However, the surgery and side effects are not insignifcant.  The incontinence is just clearing up but it has really been tough to deal with.  It bothered me more than I thought.  Also, even thought I am continent for the most part now I still have urgency and occasional leaks.  I think it takes one year for total control to be normal and mindless.  The ED is very signficant at this point.  I can achieve a 20% erection with stimulation - my doctor says this is good and that I should get to the point of erections with oral meds alone but I may need shots for a while.  I am only 53 so this has been a lifesyle shock.  My wife and I were once a week types pre-op with more activity on vacation etc.  If I can do oral meds in the future and I will be happy.  I must admit that seeing your penis flacid daily wears on you and I must admit I have my doubts about where it will all end up.  Unfortunately the side effects of other treatments also accumulate overtime and without surgery you have less info regading your true cancer situation.  In the end I am glad to have knowledge of my path with hope for improvement in ED dept.  BTW- worses case scenario you can use shots forever and someone I know swears by these. Unfortunately this disease is a lose - lose situation.  Something is sacrificed.  I have been depressed over this scenario but I have hope for return of all my faculties.  If you are a very sexual person and your wife is such you should  probably consider non - op options in my opinion as there is no guarantee you will come out unscathed.  In that case you will worry about your prognsis more.  Hope this helps.

Yoop,
I think you owe it to yourself to see an oncologist. I don't know in what part of the country you reside...or that it even matters. I would recommend Dr. Gregory Merrick, Schifler Cancer Center, Wheeling, WVA to anyone.