gravitational incontinence 2 years after daVinci prostatectomy

Hi chewbydo, 

I had a very similar situation to yours, and I was the same age as you at that time.  I Kegeled until I could crush sticks with my butt sphincter, but it did nothing for my urinary incontinence.  I had the same incontinence symptoms as you have, and a year or so after my daVinci prostatectomy, a cystoscopy confirmed that my sphincter on the urinary side was essentially a wide open barn door, unlikely to change.  Finally, with consultations with folks in this forum, particularly Trew, I had the AUS 800 implant surgery.  That was 1 1/2 years ago, and I have never looked back.  Truly a life changer for a person in your situation.

My experiences are posted in this forum.

http://csn.cancer.org/node/188931?page=3 - 5 postings

http://csn.cancer.org/node/188931?page=5 - 3 postings

If you decide to move forward with the AUS 800 implant , as with any other surgical procedure, and to the extent that your medical insurance coverage will permit, interview and select the most experienced surgeon that you can, with lots of experience in performing this type of surgery.

Good luck in your decision process.

Josephg

I'm right behind you! Had a RRP five years ago then 37 IMRT treatments about one year ago. The leaking is getting worse than it ever was. Only a small amount regularly but when we have sex and I have an orgasm, afew tablespoons leaks out. That totally grosses out my wife. Needless to say oral is out if the question! Ha ha. I'm going to read all these posts. I had a penile implant put in right before radiation also. What was the operation like? How much pain and recovery? Thanks you guys. Randy

I am saddened and angry that so many men are having radical prostectomies.  The PSA test was developed and approved to monitor existing and known prostate cancers, not detect cancer.  Many factors effect PSA tests, namely exercise, sex within the last 24 hours and other factors.  Second, PSA tests are notoriously inaccurate, with results being about as accurate as a coin flip.  As we age, the odds of cancer within the prostate increase, so much so that by the time you are 65, 65% of men will be have cancer present in the prostate.  The odds of dying from prostate cancer are equal amongst those who have been PSA tested and those who have not.  Think about that--  500 men PSA screened, biopsied and operated on have the same survival rate as those 500  never tested.  One study, the PIVOT study compared survival rates between those who had surgery and those who did not over a period of 12 years.  Survival rate between the two groups was identical.   Further, the surgical group suffered rates of complications approaching 90% involving urinary incontinence and erectile dysfunction for at least 3 months.  About 1/4 to 1/3 of those suffered permanent problems that required further surgery to alleviate, not cure, those two aforementioned problems.  Too many of you men have been led to believe that things like the DaVinci system have better results.  It doesn't.  Proton beam therapy?  Same.  Operating on the prostate is notoriously difficult because the nerves pass thru the capsule and it is essentially like trying to peel away wet tissue paper, a very tricky adventure to not damage these nerves.

I have much more I could say about this whole mess but I'll close with three thoughts: 1) Survival rates for those with prostate cancer are no higher than prior to PSA testing that began en masse in the early 1990's. 2) If you over the age of 45 there is nearly a 1:2 chance you have cancer in the prostate and this number goes up as we age, meaning you are going to die with prostate cancer not from it, the odds being 50:1 you have the indolent form and pathologists have no way of determining of which is which at this point.  3) A digital rectal exam is more likely to find concerning changes and at this point there really is no replacement, though many medical products companies marketing PSA tests and urologists say differently but can not produce numbers to prove it.  The AUA in 2013 has been finally forced to acknowledge the massive damage that has occurred with aggressive biopsy and overly aggressive surgery as a solution to a problem that provides no better survival then if you did nothing.  So, please, men, think long and hard and ask your doctor these two questions: 1) Is the cancer agressive or indolent?  (You can only know if it leaves the prostate and odds are 50:1 it is indolent); 2) Removing my prostate lowers the chances of dying from prostate cancer no lower than someone who does nothing. If the odds are 50:1 it is non threatening, why are the very high risks of permanent surgical damage to erectile and urinary function acceptable?

Would I even bother to have a PSA screening?  Sure, why not but unless the numbers are off the chart, so what? Then I'd have a follow up in conjunction with DRE and imaging study should the DRE be abnormal.  Biopsy only if the DRE detects abnormal lumps, size and/or shape. How do I monitor my prostate health?  Watch for sudden changes in urinary and erectile function and an annual digital rectal exam.  Don't let the word "cancer" stampede you into a very risky life altering surgery.

Read more on this subject:  Richard J Albin PhD and Ronald Piana.  "The Great Prostate Hoax: How Big Medicine Hijacked the PSA Test and Caused a Public Health Disaster"  (Albin is the inventor of the PSA test) 

Best of luck and do not let fear drive your decisions.

Rtyrrell said:

PSA testing

I have to disagree with your assumption that a PSA test has anything to do with prostate removal. It's just a sign that something may be wrong in the prostate. Not just cancer but an enlarged prostate or a infection. Look at the pas test like a woman getting a mammogram. It is no reason to get a double mastectomy. Only a biopsy can tell if a guy had cancer and how aggressive it is. My dad died from prostate cancer and my uncle had it. Had I not had a PSA test I never would have found out I had it also. PSA was 14.81 and Gleason 7. It had already spread outside the prostate so stage three. The stats of prostate cancer are virtually the same as women and breast cancer. you are assuming the surgery a are the result of a PSA test. Anyone who has a RRP going by only a PSA test sure dosent have any idea what they are doing and no qualified surgeon would ever do surgery on the results of a psa test only. Just my opponion and the American Board ofUrologists. More education of patients may be the answer. I have heard on some other blogs of guys with a PSA of 2-4 with one core positive Gkeason of five or even four, wanting surgery. These are guys who could be in AS. Just my opponion. Randy 

By the way, a PSA test should be done every three months after prostate removal for the first few years then twice a year for the rest of  your life. Any cells that escaped after surgery can travel anywhere in the body. The lymph system, spine , lungs ect. They will still be recognized as prostate cancer cells even though the prostate had been removed. The ideal PSA number after surgery is 0.0 but could be 0.1 after afew years. If it starts to go up say to 0.3 that may be a sign that the cancer is back and usually radiation us done as a follow up. 

Rtyrrell said:

AMS 800

I'm right behind you! Had a RRP five years ago then 37 IMRT treatments about one year ago. The leaking is getting worse than it ever was. Only a small amount regularly but when we have sex and I have an orgasm, afew tablespoons leaks out. That totally grosses out my wife. Needless to say oral is out if the question! Ha ha. I'm going to read all these posts. I had a penile implant put in right before radiation also. What was the operation like? How much pain and recovery? Thanks you guys. Randy

Hello Rtyrrell.  The AUS 800 surgery itself was easy.  Done in a teaching hospital.  I walked out of the hospital and to the car in a multi-story parking structure the next day about 20 hours after surgery.  Picked up anti-biotic meds and pain killers at the hospital pharmacy on the way out.  During the following two/three weeks I was most uncomfortable considering the swollen testicals, several incisions and continued drippage.  The pain meds did their job, but caused nausea and constipation.  Not knowing what to expect was upsetting, thinking the worse.  I appreciated the help of several members of this forum who had been there.  By the time the surgeon activated the pump, I was feeling pretty good.  Hope this helps.  There are others on this forum who have more detailed reports of their procedure and aftermath.  I think you can retrieve their comments from the files.  tpelle

dhunt60 said:

RRP

I had RRP surgery in 2007. I was told it was my only option.  Before surgery my PSA doubled in 6 months from a 1.7 to 3.5. Gleason scale was 7.5. i was impotent from day 1 post surgery and had moderate stress incontinence. in the past 7 years I have had 5 or 6 dialactions/bladder stricture surgery's. I am now totally incontinent and have been told that my bladder stricture will probably need to be incised again. Who knows how many times.  I have also been told that I am not a candidate for the AUS 800 because I would never be able to be catherized. The other option I have been given is to self catherized myself daily in order to keep the bladder opening from shrinking. I am 67 years old and I use about 8-10 maximum thickness pads a day. Any good news on the horizon?

Hello dhunt60:  After my AUS 800 was activated, I was told by the surgeon that if I ever needed to be catheterized, the pump would have to be disabled.  I wear a medical dog tag which says "Don't catheterized until AUS is disabled"  If you were told that you would never be able to be catheterized, that instruction may be specific to your case.  However, I'd get a second opinion.  tpelle

tpelle said:

Can't Be Catherized After AUS 800?

Hello dhunt60:  After my AUS 800 was activated, I was told by the surgeon that if I ever needed to be catheterized, the pump would have to be disabled.  I wear a medical dog tag which says "Don't catheterized until AUS is disabled"  If you were told that you would never be able to be catheterized, that instruction may be specific to your case.  However, I'd get a second opinion.  tpelle

Unless you have some overriding condition that you have not mentioned, with an AUS you can be catheterized, but you must shut off the AUS. That is why it is prudent to wear a MedAlert bracelet or necklace. Someone could really screw up your AUS if you were catheterized routinely after some sort of accident. But dhunt60's response could mislead others. It is wrong, unless other considerations are present that weren't mentioned....cheers

ps. AUS800 user since 2011. Could not be happier and my only worry is if I ever wear the device out and need it replaced. The surgery is a bear post op. The results a dream.

I am curious, and maybe this question has been answered before, but can incontinence return after being dry for months after a prostatectomy?  Also, can it be so unpredictable?  Currently 7 months post robotic prostatectomy combined with a bladder diverticulotomy, I still have days of litttle control and other days I'm fairly dry.  As a result, I wear some kind of diaper most of the time.  Diapers don't bother me too much since I had incontinence issues before my surgery.  I just wish I had a definite answer...what to expect in the future.