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Nerve sparing and realistic results

ScottFree
Posts: 2
Joined: Jul 2017

Hi my name is Scott and I'm 42 years old and about to have surgery to remove prostate. Was diagnosed in march. I opted to wait it out and see how it would progress. My PSA has doubled very month since march. I am having the robotic surgery on 16 August doctor says it's contained to prostate and feels confident on performing the nerve sparing procedure. I'm new to all this and still kind of in shock phase. My biggest concern is being 42 and no longer having sex life. Not sure what to expect after surgery. Any advice of what to do or not to do after surgery is welcomed! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Scott,

Your worries are reasonable. You do not give a lot of detail regarding your diagnosis, but virutally everyone here would say that every man, even a man resolved on surgury, should at least speak to a radiation oncologist for options.  You owe it to yourself.

There will be "down time" for any man following surgery.  But I am 61, was 58 at DaVinci removal. I was having sex again a few months after the operation.  Other men were less fortunate, and they write here also.  Even a year of impotence is possible, but it does not mean sex will never happen again.

Surgical removal is in most studies essentially identical to radiation therapy in overall rate of cure for first-line treatment of prostate cance that has not escaped the gland.

You are very young for this diease; the average age at diagnosis in the US is around 67 years of age.  Often, PCa at vastly earlier ages is indicative of more aggressive disease, so stay on top of this, and get more than one opinion.

max

max

JS2017
Posts: 7
Joined: Jul 2017

I had robotic surgery in December 2016. I was 65 years old and I went through the same decision process and emotions as you, I am assuming. I talked to three surgeons, two at IU Health and one at Urology of Indiana. It was an easy choice to choose one at IU Health as he was very experienced and calm, confident and kind. The doctor at U of I was arrogant, negative and he didn't even bother to make sure he had my records before my appointment.

Prior to surgery, my PSA was at 17 which is very high.

My excellent surgeon was Dr. Ronald Boris.

I also talked to an urgent care doctor when I went into the facility for a different minor problem. He emphatically told me to get the surgery ASAP and save my life. His brother and dad had prostate cancer, so he knew what he was talking about!

The surgery went well, per my surgeon. I was uncomfortable after surgery, but not in much pain, because I had a tube in my throat and my face was swollen, but it all got better within hours.

My stomach had six small incisions which healed well within six weeks.

My nerve was somewhat damaged on one side. The surgeon removed some lymph nodes to make sure he got all of the cancer. My cancer was still encapsulated in the prostate. A month later the PSA test showed zero, meaning no cancer. Second PSA test showed no cancer, too.

Urinary continence returned in just two months! I was so relieved. I tried Cialis and Viagra, but neither of those drugs helped me. Today, I tried Trimix (penile shot). I got a month of shots through Custom Med Apothecary in Indianapolis. It worked perfectly! My erection lasted for several hours. Trimix costs about $95.00 per month. I can afford this, luckily. Medicare does not pay for any of these treatments. Medicare will pay for a surgical implant (I checked). I know you are younger, but I wanted older men to know if they read this post.

The shot was "not that bad" just like my surgeon had said.

If your cancer stage is similar to mine, then you may have the same results. You will have sex again. The orgasm is different, but it's okay. It's just kinda different.

My wife was really happy. She said it was worth the wait. She struggled with depression after surgery, but she went on a low dose of Paxil to help herself cope better. This illness has made a difference in our lives, but we have grown closer because of it. Before surgery, our marriage was rocky. We changed our focus and worked at getting closer again, knowing how things can change quickly when health concerns are involved.

I can't say yet whether I will need to continue with the penile shots forever or whether I will regain normal erections within a year or two. If I do not regain erections, then I will need to think about an implant. I am patient and willing to give my recovery plenty of time.

Hang in there and remain hopeful. Staying calm as much as possible will help you the most after surgery.

 

MK1965
Posts: 174
Joined: Jun 2016

Scott,

I saw your post 3 weeks ago, but since I did not have any encouraging words about surgery, I waited to tell about my bad luck with surgery. I am at 9 1/2 months post RP and my ED recovery did not even start yet. No signs of life down there, no feelings, no stirrings, ABSOLUTE ZERO. Lost 2+ inches of length and lots of girth. I have second navel down there where penis used to hang. Have to sit to urinate, becouse nothing left to pull out of my pants. I did not have any success with Cialis, Viagra, VED. Started TRIMIX at the end of April which gives me erections but my penis looks pathetically small like when I was 10 or 11. 

I am sure, you see on this forum, some guys are bragging about excellent ED recovery which should be taken with reserve, because it is way more of guys with not so good results and outcome. Sometimes, they bragging about their erections while catheter was still in or in first month or two, are very discouraging to us with nothing to report And making guys with slow or no recovery feel worse.

But that is the internet. No one knows other posters so it is not much to verify. 

I wish I can be like one of them to write something good or excelent but maybe one day something better will come from me.

Untill then, just hope for miracle to happen.

At time of surgery, I was 51 in excellent health, not on any meds very active, non drinker, non smoker, never had problem with achieving and maintaining erection as long as my wife and I wanted, we had very active sex life. With surgery, everything went down the drain.

MK

 

hewhositsoncushions
Posts: 269
Joined: Mar 2017

@Scott

It is a challenge to make the necessary choice but something needs to be done at a young age. Everything about this from what I can see is a bell curve of chance - some men fall one side, some another and most in the middle. The one thing I have learned is it is important to do the things that adjust the odds - diet, fitness, medication, kegels, meditation, whatever it takes. You either own the disease or it owns you. I flapped like an old woman but still slogged through. I've got a huge mental battle ahead of me.

@Max

You are right but as I think you said yourself the outcome is the same but the side effects are different. Being informed is key.

@JS

Sounds like a similar story to me. I had bilateral nerve sparing. My first so called boner afterwards looked like a drunk left hand turn. Yikes! I've had some luck since but I'm learning the hard way, in every way, this is a long game.

@MK

I sense your frustations from this and other posts. You aren't alone. I suspect most men at the early stage and even 9 months is early have to work bloody hard. I tried viagra yesterday and although it sort of worked mostly I just got a headache and a WTF feeling. I don't think other people sharing their experiences are bragging, they are just glad they are having success and want to share. Everyone has a different set of issues. Mine are all in my head. Yours are elsewhere. I don't think there are "lucky" PCa survivors - just people with a different story to tell. I doubt ANYONE (excuse my bluntness) is banging hookers in three day coke fuelled marathons after PCa surgery. I'm not - I intend for that to happen on my death bed :) I lost an inch and can't rise up on demand - it takes work. My consultant, brilliant though he was otherwise, poo pooed even the idea of penile length loss. We all get lied to. I think the trick is to focus on the positive and work out ways to attack the negative or solve problems, day by day. I have heard that one can have surgery to get back some length for example. Keep fighting.

 

C

Grinder
Posts: 438
Joined: Mar 2017

For the record, MK had a TURP procedure done 6 months before the RP. Another patient in the archives had a similar experience. I am thinking there was, and should be, warning of risk during radical prostatectomy when a TURP procedure was done prior. I do not know how a prior TURP affects nerve sparring robotic surgery, but any correlation would be significant enough to warrant a biopsy prior to a TURP procedure to eliminate the possibility of PC, making the TURP procedure totally futile.

Let's face it, why should a potential PC patient have a TURP procedure done with the possibility of RP looming in the very near future? Being a skeptic, I do know that some urologist are capable of performing a TURP, but are not qualified to perform DaVinci RP.

Do you get my meaning?

My 4th urologist informed me of the TURP procedure, but also informed me of DaVinci RP as well, even though he was not qualified to perform it. He also suggested I start HT to shrink my massive prostate, or I may have to have open surgery. Fortunately the antibios knocked it down to about 200 grams in weight by the time of the surgery and I had a really good Davinci surgeon.

No we are not bragging. I joke about "Stubby" because I have to take a grateful outlook on this, because life really really SUCKED before RP. I would never say it at the time, because I was blessed with so many great people and things during that time, but there was no sex life for us as long as I had a Staph infection in my prostate. And you can't even get a woodie with those frickin catheters sticking out of your business. 

So that was my choice... No sex life with the wife at all, or the possibility of a sex life someday if all went well. And if you have prostate cancer, it CAN kill you. It killed my neighbor. What Mrs. T would give to have Mr. T back sex life or no. She just sold the house this week. They raised and raced horses together. Now someone else will take over the ranch, including the horse head bronze mailbox and the horse themed outdoor lighting. She won't own a horse again. He won't be back.

PC is not to be taken lightly. If someone needs more than Active Surveillance, consider all options carefully. Maybe someday there will be even better procedures than DaVinci RP, and CK, and RT. But for now these are what available and ALL variables have to be weighed when deciding what procedures to employ.

MK1965
Posts: 174
Joined: Jun 2016

Grinder,

if you go to "Healing Well" and serch for poster "garyi" you will find 70 year old guy who had TURP in February 2016, and also accidentally diagnosed with prostate Ca. He had RP in July 2017 and he reporte having full size erection at 4 weeks post RP.

So, I do not think Turp is to blame in my case. Also, I am 18 years younge.

Can you now arrive at conclusion?

MK

GeorgeG
Posts: 127
Joined: May 2017

There are different levels of surgeon results. The most experienced and gifted have better results. A good surgeon will give you his numbers. For a man your age you have a much greater than 50% chance of returning to baseline erectile function and continence with double nerve sparing surgery. If I remember my surgeons numbers correctly (I am traveling without my notes), for a man your age with good baseline function its around 80% for erections and 90+% on continence. Erections can take up to 4 years to resolve but you usually get what you get by 18 months. For urinary control its 18/6 months.

I am 10 months post surgery and 100% continent. As a matter of fact I drank too much water going into radiation treatment today and the tech said that on the CT scan she saw one of the most overfilled bladders ever and could not belive that I was still laying there humming. My surgeon would be happy. I have around 50% erctile function after nerve sparing one side.

Good luck and keep us posted.

George

 

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

As you can see by the comments most results are favorable along with a not so favorable.  There are no guarantees so be prepared for the worse, hopefully it will be the opposite.  I had my prostate removed almost three years ago and I am back about 95% on the erection scale and about where I was before surgery on the leakage scale.  Older men sometimes leak a little after they pee, that's me.  My leakage has been handled by a lite pad I change once a day and it's not soaked when I remove it.  Overall I sleep well at night knowing the cancer was removed(I hope).  All forms of treatments have side effects, some early some later on after the proceedure was done.  Good luck and keep us informed.  Your best day will be when the take the catheter out, believe me.  Livin life six months at a time.............................

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Scott,

My view of post-op RP is pretty identical to what Cleveland wrote.  What will happen to you cannot be predicted by what any group of guys write here or elsewhere. The results vary a lot.

My continence actually improved a lot post-op, because I had had BPH for years anyway.  A net improvement for me after surgery.  Most guys do report some shrinkage, and sexual function will take a while  to return for virtually every man.

You are very young for aggressive PCa,so it is best that you went ahead and took curative action. Your PSA vectoring required action.

It is past your planned surgery date, and I hope you write again soon. There will be a tough few weeks...

max

Grinder
Posts: 438
Joined: Mar 2017

Here's the conclusion... I lift my glass to toast the old geezer who is having full on erections at 70 years old within four weeks after RP!! A bigger man than I am, at least in one sense of the word. 

Laughing

But my point remains... why are guys getting TURP procedures done at great expense and risk when RP could be in their future? Why get it reemed out when it could possibly be removed within a few short months? I

Why are biopsies not scheduled before TURP? Then if there is no PC, or candidate for AS, THEN a TURP could be scheduled as a solution. Instead guys are getting TURP only to have their whole prostate removed anyway. 

Am I getting this through to you guys? Am I not explaining myself coherently?

MK... Please continue to detail every bit of your experience, for the sake of the guys that read this later. And I have to say again, my "Stubby" is nothing to brag about. I will be avoiding men's locker rooms in the future cuz like Ricky says "I have a lot of splainin to do!"

 I do wonder though.. Somebody said something about the RP taking a lot longer because of the previous TURP procedure. That would throw out a red flag for me. Why would that be? If the whole enchilada is taken out, why would the previous TURP affect the removal?

If I roto rootered a pipe, then took it out a couple months later, it wouldn't make any difference in the removal. Why does it make a difference with a urethra if the whole thing is coming out anyway. 

Think about this... The TURP very possibly removed a good deal of the urethra. If the RP took out EVEN MORE, then that would be a disaster. The TURP surgeon SHOULD reem only that part of the urethra that would be taken out in event of an RP... But does an inexperienced surgeon even take that into consideration? Does the area of urethra reemed in a TURP vary from person to person, or surgeon to surgeon?

C'mon you geniuses, figure this out for me. Is MK's problem with RP, or was TURP and RP a dangerous combination?

For guys in the future who are considering TURP with the possibility of RP looming in the future, we owe it to them to figure this out.

airborne72's picture
airborne72
Posts: 275
Joined: Sep 2012

Scott:

I had a radical robotic prostatectomy in June 2009 because I "thought" that was the cutting edge of surgical efficiency.  Afterwards, the surgeon said that he had to take out some of the margins and the ED nurse PUSHED the "keep it active" conversation.  Looking back I think they were speaking to me in code.  What they were really saying was there's probably a 1% chance that you will not be ED for life because I took out most of your nerves.

I was incontinent for two weeks and that bothered me more than ED.  Fortunately that remedied itself.  However, I am now 66 and woody ain't seen the sunshine since June 2009.  I tried the pills but could not bring myself to try injection.  If I were your age then I would have.

Let me say this about robotic surgery.  I am not a proponent.  If I could do it over I would defer for an experienced surgeon who had both hands on and eyes on the situation.  Mr. daVinci's robot left a piece of plastic (C clip) in my bladder.  After several weeks it migrated through my urinary tract leaving scar tissue along the way.  I have had two subsequent surgeries to remove scar tissue from my ureter.  I blame this on the machine. 

Another piece of advice...I would not submit to surgery in an educational hospital.  Their focus sometimes gets diverted and patient care becomes secondary.  This may be too late because you may have already had your surgery.  If so, I wish you all the luck.  Youth is on your side and that makes a significant difference.

When it is all tallied up, I am still alive and that is what matters.

Jim

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