CSN Login
Members Online: 4

You are here

New Member Intro & Question

TJA1
Posts: 3
Joined: Jun 2018

i was diagnosed with PC in 2016.  Initially found during my annual physical where my PSA had risen to 5.7 from 4.2 in one year.  (I should note my PSAs were always high because I’m a former competitive bicycle racer, however my year on year increases had never exceeded 0.1 - 0.2.  No nodules on the prostate could be felt during DRE’s so a biopsy was performed.  12 cores with 9 of 12 showing abnormal cells - Gleason was rated 3+4.  Entire left side of prostate involved, outer 3 cores of right side clear.

Elected to have DaVinci RP performed locally by highly recommended local surgeon.  Surgery performed October 2016.  Nerves on left side were not spared however they were spared on the right side.  Post surgery Gleason 4+3, Clear margins and no involvement of seminal vesicles and pelvic lymph nodes.  Catheter removed after 7 days.  PSA‘s were 0.01 by the second PSA test 6 mo’s after surgery and continue to be 0.01 to date.  Still having PSA tests every 3 months.

Physical Therapy began in November 2016 and carried through until April 2017.  Since being discharged from PT, Ive been diligent with the kegel routines proscribed by the PT.  I’ve been dry at night, sitting and during minimal exertion from about 10 months post surgery.  My vexing problem is the leakage (albeit minor) during walking.  It has reduced over time but after about 15 months post surgery seems to have leveled out and is around 4 to 10 ml (based on pad weight) over a 4 mile walk.  It is inconsistent, occasionally I’ll have a major leaky day and overflow a pad with all the attendant change in plans, shower, change clothes etc.  I can use one of the thin shields or a bigger pad for a walk, I’ll never overflow a big pad but a bad day will overwhelm one of the shields.  The leaking is difficult to describe - I can rarely point to a step off a curb, trip over a roof as a leak cause.  It’s as though there’s a drip or two every so often constantly throughout the walk.

I’ve spent a lot of time reading on this forum and realize that I’m doing well compared to some but I am certainly not ”dry” if we apply the no pad before surgery no pad after surgery definition.  I’ve had issues engaging my urologist/surgeon in a discussion of my situation and he pretty much blew off my concerns for the first 18 months.  I finally got his attention after giving him a 7 day voiding diary and telling him this was unacceptable to me.

I’m currently on a 5 week sample program of Myrbetric as some of my leaking symptoms pointed towards some urge incontinence.  Following that he’s planning on a cystoscope to look inside my bladder if the Myrbetric doesn’t improve matters.  I’ll do another 7 day voiding diary after 4 weeks of Myrbetric to quantify the effect.  Thus far, qualitatively it seems the Myrbetric is slightly reducing the urge during walks but not significantly reducing the leakage amount.

My question is where to go from here?  I know I’m not a candidate for sling or implant surgery as I see more risk of them making things worse than improving matters.  I’m thinking of asking for a PT referral to see if there are any additional/different exercises I can be doing.  I feel like I’ve run 25 3/4 miles of a marathon but just can’t finish that last 1/4 mile!  Is being dry a realistic goal?  I am now 20 months post surgery.

TIA

Terry

MK1965
Posts: 174
Joined: Jun 2016

TJA1,

 I think this is it. You reached your max and you suffer post RP stress incontinece. 

Thanks God, your leaking is not terrible. i had my RP on 11/2/2016 and I ended with same thing, stress incontinence especialy If I am physicaly active. Whenever I am running or officiating game I have pad in my compression short. Most of my leakage happens on sudden movents or direction change while runnin, lifting, sneezing, blowing my nose, farting etc.

After 20 months I do not expect any progress in my case, also possly in yours.

Since we were close with our surgeries, I would like to ask about your progress with regaining erectile function.

I went into surgery with 4+3 but luckily downgraded to 3+4 after surgery. I had bilateral pelvic lymph nodes dissection.

Also had bilateral nerve sparing. Recovery of erectile function did not happen after doing extensive penile rehabilitation.

Used Cialis and Viagra with no success, VED was useless in my case, TRIMIX was to painful and BIMIX does not produce good erections.

Suffered significant loss of length of 2+ inches.

MK

lighterwood67's picture
lighterwood67
Posts: 203
Joined: Feb 2018

I had a RP in March 2018.  I am getting better everyday.  In a weeks time, I am completely dry 3 of 7 nights.  The other nights very little.  I wear under armour boxer/jock with a thin pad most of the time now.  I exercise 3 to 4 times a week, usually with no leakage.  For example, I can do 30 lb curls (15 lbs on each arm 40 times 3 sets), with no leakage.  I have gotten to the point where when I sneeze, I have to think about it, but I can stop it.  Another thing that I try to do is when urinating, stop and start the flow.  I do this several times a day.  My guess is that this maybe strengthening the sphincters.  It gives me confidence that I can control this.  Most of the folks on this site tell me I am doing good.  Please do not take this wrong.  I am not bragging.  Prostate Cancer is a multi-faceted cancer that can be crippling to a man and indeed can lay you to rest.  Best of luck to you.  If you have not already tried that stop and start flow, try it, maybe that will help.  Best of luck to you.

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

Sounds like your are investigating your problem and I feel that's what you need to do. Keep going to your Urologist and try to find a cause for your leakage.  It could be that you will not get any better but you need to thoroughly investigate all options before you come to that conclusion.  I feel I did not improve much after about 2 years after my RP but eveyone heals differently.  Like you I will drip a little if I do some heavy yard work or do something which requires odd movements.  If I just sat around in a chair all day and watched TV I would be about 99% dry, but I don't do that.   If I am going out in the evening I just go and change the pad which is just my preference.  You might want to try a second consult with another Urologist for a different opinion if you feel your first doc is hitting a brick wall.  You will have peace of mind if you do all that you can do and then reach a conclusion whatever the outcome may be.  Keep doing the Kegel's, I feel they did me a lot of good, still do them 4 years later every day.  Don't give up until you are satisfied that you have investigated everything.

Dave 3+4

TJA1
Posts: 3
Joined: Jun 2018

Thanks for the replies.  The answers were mostly what I expected, everything I had read pointed to after 12 - 18 months what you see is what you get.  The Myrbetric is having an effect, in that it delays the onset of ”the urge” to later in my daily walk and I think the total number of times I void per day are reduced.  Initial observation indicate it doesn’t seem to affect the total quantity of leakage while walking.  I’ll be doing the voiding diary later this week to quantify these anecdotal observations.

MK1965.  I don’t have much good news regarding ED, if the 1965 is your birth year I understand your concern, you are considerably younger than me.  To directly answer your question, since surgery I have had 1 fully functional unprompted erection, the others have been less hard and obviously not very useful. Prior to surgery I had zero problems.  The good news for me is that the fully functional erection was most recently, so perhaps some healing is still taking place.  My surgery was only nerve sparing on one side, so I was not hopeful for erectile function.  My Dr had me using one of the pumps and taking daily 20 mg Sildenafil starting 3 mo post surgery.  I was supposed to take 5 Sildenafil (100 mg) once a week and see if they produced an erection.  Five produced a massive headache and not much else and I eventually gave up on using Sildenafil daily after 9 months.  I also gave up on using the pump daily after a year.  Interestingly the best erection occurred after I stopped worrying, not while I was doing all the pill taking and pumping.

It is my understanding that two sets of nerves are involved in obtaining an erection.  The nerve bundles surrounding the prostate are the ones that control the initial blood flow (the tingly feeling at the start of arousal) to start the erection process.  However there are other nerves within the lower abdomen that are involved in restricting the blood flow out of the penis.  These two nerves are located somewhat randomly and not symmetrically on either side of the lower abdomen.  In other words they’re hard to find and just because they can be found in one person doesn’t mean they’ll be in the same place in another person.  Nerve cells that are stretched more than 15% of their length are just as damaged as those that are cut with a scalpel.  I could see as the diseased prostate (mine was 3.5 cm x 2.5 cm x 2 cm according to the post surgery pathology report - that’s a lot bigger than a “wall nut size healthy prostate LOL) is pulled up and out of your abdomen if it caught on the nerves it could pull on the pfibers and stretch them.  I only bring this up because of research I did regarding the state of my erections.  It seemed to me that I had no shortage of the initial tingling arousal sensations but my penis would never seem to get very hard or stay erect.  That seemed to me blood was starting to flow in but continuing straight out because the vascular constriction necessary for an erection was not taking place.  If I can find the reference material again where I read this I’ll post a link for you.  When discussing  ”nerve sparing“ my Dr never mentioned this second set of nerve bundles just the two bundles either side of the prostate.

Lastly, it seemed to me some penis length was lost immediately post surgery.  However, after using the vacuum pump it seemed to me the length recovered.  I never really measured it however so I may have just come to terms with a new normal shorter length.  The one good erection seemed normal length.

Again, thanks for the replies.  I appreciate the support.

TJA1
Posts: 3
Joined: Jun 2018

It’s a heavy read.  The discussion of basic function of erections starts on page 4 and then starting page 20 is the discussion of nerve damage and ED.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1351051/

MK1965
Posts: 174
Joined: Jun 2016

TJA1,

Thank you for your response. You are right; 1965 is my birth year.

At time of diagnosis and surgery, I was 51 y/o. Prior to this ordil with Prostate Ca and RP, I was sexually very active and never had any problem with achieving and maintaining erections. Never used Cialis and Viagra before RP.

Now, I am living totaly sexless life.

What else to say then , I am totally disappointed with the outcome.

MK

Subscribe to Comments for "New Member Intro & Question"