Nerve sparing prostatectomy

[Checkmate123]

Has anyone had nerve sparing prostatectomy? Am contemplating selecting this a course of treatment. Can you share some of your experiences with the procedure and the results. Did the results meet your expectations? Thanks!

[Tall_Allen]

Nerve-sparing is a goal, not something you have any control over. If he sees more cancer at the edge, he will cut wider. Usually, some nerve sparing is possible, but ED, shrinkage, and climaturia are common anyway. I assume you have done your due diligence by meeting with a variet of specialists in other options as well.

[Pierre71]

Two years ago I had a complete removal of my prostate and seminal vesicles. My cancer was very small and not very aggressive and I had robotic surgery with preservation of the nerve, in my case, it really met my expectations. The cancer has been eliminated, my urinary control is perfect and my erections are back as before. Everything is almost as before except that I am sterile and I am no longer able to ejaculate, I have an orgasm and its sensations but it is completely dry, no semen spurt out of my urethra.

[Leeaussie5]

Hi my experience is much like Pierre71. All good. But your choice of surgeon is critical. It is the one thing you have complete control over.

When I went around, some surgeons claimed you had to expect a 10% chance of urinary leakage - needing you to wear pads. The one I chose had a 1% leakage rate.

I really recommend you ask about their success rate.

It isn’t just nerve sparing; it is also how careful they are in coaxing the prostate out so as to minimise stress to the nerves. The skill and care of your surgeon is paramount.

Also - You should also consult a specialist in erections BEFORE surgery. They will be able to advise how well you may do. If you are having any erection issues now, be assured they won’t get better after. And remember that 60% of men aged 60 have erection issues.

Best of luck. This is a scary time.

J

[jimreilly]

I think you'll find, if enough people answer, that the results are all over the map from the very good ones as above to people with serious problems with erections and continence. The advice about choosing your surgeon carefully is good. And know what you're going to do (and your doctor's office should help you with this) to help insure the best possible erectile function afterwards in terms of kegels, meds, and behavior (how soon can you start having sex, what should you do and not do, etc.). If you doc's office isn't interested in talking about this before the surgery, find a different office.

[Vitruviusman]

Nerve sparing is amismomer. Rarely any man that has this prostate surgery can get full erections after having prostate out. However, you may still get orgasm but with flasid cock. To make cock erect,use The ED injections trimax will make cock hard

[Sharprick in reply to Vitruviusman]

Hi I am happy to disagree. It’s never the same for any of us but many men, myself included, make a good recovery and have a good sex life

[Vitruviusman in reply to Sharprick]

You are the extreme minority of men that had the surgery . Just look at the number of erectile dysfunction ads that are out there, as well as the number of posts here of men that have erectile dysfunction problems because of the prostate surgery. I rest my case. Otherwise there would be no need for many of these blogs

[Sharprick in reply to Vitruviusman]

I don’t want an argument but you need to look at the medical statistics that I’m sure will show that for many a return to an active sex life is a realistic possibility

One of the problems is that prostate cancer affects older men who are already having potency issues. Looking at adverts is not indicative and nor are blogs unless they deal in statistics. Remember men who do not have issues are much less likely to blog about that. We are a mixed community with a huge variety of issues and when people take very important decisions they need to look at the situation-in the round. The Macmillan nurses are a very good source of medical and emotional support. Scaremongering is not helpful to the many men who are frightened and desperately trying to make important descisions

[maley2711 in reply to Sharprick]

yes, good to stick to scientific method and minimize dependence on anecdotal "evidence". Thanks to Google, it is very easy to spend a little time and find statistics for the major side effects from any cancer ttreatment...but statistics are not a prediction for a specific man!

[Sharprick in reply to maley2711]

I agree One of my most difficult lessons has been learning that statistics are no guarantee for the individual

You have to make choices based on a wide range of factors but not anecdotal evidence. It can be so scary at times

[Vitruviusman in reply to Sharprick]

I beg to differ. I personally know men that are between 45 and 64 all in excellent physical shape including myself, this nerve sparing only left us with the orgasm with little hope for an erection. The only thing that works are the injections. I'm not talking about fear-monging as you accuse me of being. I'm talking about reality of men that I know and talk on a regular bases. I look at all the men around me and in the numerous prostate cancer men's group that I've gone to. In the results I shared here is the majority of comments I heard by men in the group. You may be one of the rare exceptions and for that you are truly fortunate . Most of us are not. One can still have a sex life but it's majorly compromised.

[Sharprick in reply to Vitruviusman]

I understand that outcomes have varied across the spectrum but actually I am am not one of a rare minority and that is all I am saying I know plenty of people like me. All I am saying is that cancer has to be tackled one way or another

and the best way in a complex decision making process is to look at the medical statistics then take advice from a variety of sources then take the best individual decision you can

I didn’t come on this site to quarrel we are all in a horrible situation and need to support each other. A lot of new people come to sites like this and are easily influenced What you describe does happen to people and it isn’t rare. However it is also not something that happens to the majority but don’t take my word for it check with the experts.

Currently mine is slowly returning so I have more worries and decisions to make

Best of luck for you Dai

[Royston123]

Yes 2 years ago, I now have lymphedema in my leg with recurring cellulitis and erectile disfunction. I’ve tried all tablets and injections for ‘ed’ but none work , devastated !!

[CHPA]

As you can see, a variety of stories and you can read lots more on Reddit and in other forums. There are also various sites which offer the results of studies. Ultimately as my doctor said, what matters is me, or in this case you.

I would offer, one year on, a few thoughts and feel free to PM/Chat me if you want.

- Do your research. There is almost too much material online to fathom written anywhere from the idiot level to that of a physician. I found the Prostate Cancer Foundation puts things in a language everyone can understand and has some good downloadable publications. The American Urological Association writes for doctors but the info is very useful for patients as well.

- If you can find a few mentors do so. I came upon a physician, about my age, who had gone through the procedure about a year before I did and his advice was invaluable. I also had a friend 15 years older who had gone through this when my age. He offered hope, as he was still going strong.

- Use a big well known medical center with a big urology department, with a urological oncologist who just does this procedure. My guy had done 2100 RARP and we talked about that. He said statistically it takes about 500 procedures before a surgeons complication rate levels out. Find a doctor you can talk to. Find one who's staff and patients love him. Doesn't have to be the Mayo clinic but you also don't want Podunk General Hospital. I'm fortunate to have a nearby university medical center.

- The surgery isn't so bad. I found the process pretty fascinating.. if only I wasn't the subject. If you are otherwise healthy you should be in overnight and discharged. Discomfort is manageable with meds. Wasn't a big deal. The catheter is odd to say the least but other than being awkward to navigate with its only a week. If you see a pelvic floor physical therapist ahead of time and start doing pelvic floor exercises ahead of time you will be ahead of the game. I took a month off work with a combination of leave and telework. It takes three or four months for everything inside to heal but taking it easy for a couple weeks was sufficient.

- As to nerve sparing, as someone said, that is the goal but it depends on how much cancer and where it is located. Your doctor should be able to give you a reasonable expectation going in as to what he can do, though he won't know for certain until he gets in. Talk to him about your desires. I told my guy, my three goals were to live a long life, maintain the same quality of life as best I could, and to minimize pain and discomfort In that order. He indicated that someone such as myself, 57, in good health, and with good erectoins, should return to that same level or a little less. You won't go from bad to great though nor will you be your 22 year old self... sadly.

- Urinary control tidied up pretty fast. I stopped wearing any pads at three months and continued to see improvement up through eight. at twelve i'm fine. Truthfully I'm much better than I was with an enlarged prostate.

- Sexual function is getting there. Different doctors prefer different medications and timing but you will get a prescription of Viagra or Cialis. Some take it home right away. My guy preferred waiting a few months until urinary control got better. But, low dose every day to help blood flow and minimize nerve damage and a higher on demand dose. I noticed a bit of activity down there around six months. At a year it is getting a good bit better and the doctor says over the next year erections will get stronger and longer lasting. I will tell you that a couple months ago I was worried about this but now I feel pretty good.

It is a lot to take in and each persons story is a bit different. The key is to have a good doctor you trust. Have someone to be with you through the appointments, the surgery, and the recovery, and to have a few folks in person or online you can ask all the little questions you will come up as you go through this. You will get through it just as thousands do every year. It is a jarring diagnosis but as I said to my guy, if you are going to get cancer, this is the one to get.

[Bruins11 in reply to CHPA]

It’s been 2 years since robotic assisted RP. My Dr was urology chair of local med school and has done thousands of these procedures.

The good news is I’m as close to cancer free as possible with PSA of .01. The bad news, I have mild incontinence (2 pads) with little chance of improvement. Also, ED. So, I’d really double check your chosen pathway , maybe check out radiation to it’s fullest. Good luck.

[dadzone43]

My experience mirrors what Tall_Allen has written. Nerve Sparing is a _hope_ and not an anatomical fact. My surgeon claimed to spare the right nerve but not the left. I am now 22 months from surgery. I have been pretty attentive to penile rehab with pills, pumps, gels and injections. I get some partial erections during sleep. Expect to lose about two inches of length and 25% of girth. I am able to have orgasm with masturbation. While injections did give me an actual, useful erection, I concluded that for me at 76 it was not worth the hassle. My younger friends in the support group have made different decisions including implants.

[Gardenpests]

I am one of the lucky ones.

It has been close to 3 weeks since nerve sparing RALP. So far, it has exceeded my expectations. I used a total of 3 pads and had an erection with orgasm on my first attempt -day 11. I can masturbate to orgasm. Taking 1 Viagra every other day to help with rehab. At this point, a little softer and shorter than before surgery and leak a little urine during orgasm. Am still healing haven't tried penetration. I am the exception rather than the rule.

If it wasn't due to luck then maybe a good surgeon (Ellis, MD, urology oncologist, U o Washington, has done about 2,000 and 1,500 brachytherapy), excellent health and fitness, weight (167lb.), 66 years, CA location + timing, Kegels beforehand, and ??

Originally the hope was to spar 1 nerve bundle, he spared both.

My prostate was Gleason 3+4, volume 4.8cc., T3a N0 (of 20) -1 extension, surgical margins clear, and the seminal vessels were not taken.

RALP followed 2.5 yr. Active Surveillance; 3 biopsies -Gleason 3+3, 3+3, 3+4; and PSA which ranged 4.5-6.

Good luck; it is what it is.

[JPnSD]

Just remember...that is the intent...not the result. Depends on skill of the surgeon and what they find when they do the procedure. Even if spared, be prepared to work diligently to get your functions back (Kegels daily)! It took about 3-4 months to eliminate any pads and about a year to see ED start to wane. It will never be what it was....but it is much better than nothing :). Unfortunately....many of us have recurrence...so ADT and salvage radiation may still be ahead.

I wish you courage on your journey.

[Gemlin_]

Statistically 50-60% return to pre-treatment function. Do not blame all perceived ED only on the procedure. Sadly, psychological explanations related to masculinity are common but maybe not discussed enough?

[BillNIttles]

There is a lot of good advice here.

You really never know. I had my robotic RP ten years ago at the age of 44. I talked to at least six different doctors before making my decision, and every one felt that because of my age getting surgery was the best move. I also met several men who had had surgery, which was invaluable. I was very healthy, 3+4 Gleason, doctor with a great reputation who had done thousands of RPs, clean margins. I lost a decent amount of size but had no ed issues and wound up with some incontinence that has gotten much worse since, And my cancer reoccurred within a year. The doctor was very surprised, first about my incontinence, then about my reoccurrence . I guess I hurt his batting average. So you see, it is different for everyone. Lots of success stories and lots of less than ideal stories.

[tajohnston]

As Pierre71 indicates my comments are the same

"Two years ago I had a complete removal of my prostate and seminal vesicles. My cancer was close to expanding outside of the prostate but still contained and I had robotic surgery with preservation of the nerve. The cancer has been eliminated, my urinary control is perfect and my erections are back as before. Everything is almost as before except I am no longer able to ejaculate, I have an orgasm and its sensations but it is completely dry."