THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

I am young compared to many of the people I have met with prostate cancer. I am scheduled for surgery with Dr. Scott Tully on April 2, 2009. My urologist tells me that I am young, my PSA (2.9) and Gleason scores (3+3) are low and that I have a bread and butter, easy case.

Unlike many urologists, mine has told me point blank that the best treatment choice is robotic surgery and Scott Tully is one of the best on the United States. With all of that said, I have still spent some time researching other alternative treatment options, but never seriously pursued any of them. I hope the "experts" are correct, because I am less than two weeks from my surgery date.

Is there any advice the survivors of this surgery can tell me so I can best be prepared for the next 6 months??

Regards,

John

My robotic surgery went well as far as the cancer was concerned. All of the cancer was contained within the prostate and the margins were clean.

The post surgery was rougher than I expected, but I survived it fine. I am 5 weeks out from the surgery and I am moving in a good direction.

My biggest issue is my incontinence. It has not really improved much since they removed the cath. I had my first follow up with the surgeon yesterday and he was a little concerned about the lack of improvement in my incontinence. He said my surgery was tougher because the prostate was way up behind the pelvis and difficult to get to. He suggested I continue on the same path I am on and call him in a month to give him an update. Everything else seems to be working well!!

I am very grateful to God that I had prostate cancer that was highly curable as opposed to another more difficult cancer.

I am now 3 months out. For some reason, the doctor's office forgot to schedule my 3 month follow up and PSA test. My doctor is very busy, so I am now scheduled to see him in mid-August.

As of today, my incontinence has not improved very much since the catheter was pulled. I continue to do the Kegel exercises on a semi-regular basis, but have no real change as a result. I am confident and hopeful this will improve with time.

I still feel blessed that I had prostate vs. some other more difficult cancer.

I am now 8 months out. My PSA level is .01, which is exciting. Cancer is gone.

I am however still experiencing incontinence. During the work week I go through approximately 2 Depends in a 24 hour period. On weekends when I am more active, I go through approx. 4 Depends in a 24 hour period. While I am sleeping and sitting I am continent.

Both my GP doctor and my Urologist believe it will not get better and I need to look at installing a sling. I met with the sling "expert" (Dr. Brian Christine) in my Urologist's practice. He has performed approx. 175 slings and claims he is one of the top in the nation on doing these? He did a couple of tests, including filling up my bladder with water. He also believes I am a candidate for a sling.

I am not real excited about more surgery, so I am trying to determine if there are any better alternatives. I have heard in Europe the use a stimulation therapy approach to incontinence. [This is in use in the US too - see Electrical Stimulation - and enter these words in the Site Search engine to see the stories of men who have used this]

Any thoughts on what my next path should be to solve this problem?

The main result of my surgery was incontinence.

I have met with or discussed this problem with no less than 7 urologists. I went through a 30 day regimented Kegel exercise program to see if that would reduce the incontinence. It did not have any real effect.

I met with a local urologist who did a basic urodynamic test. He felt he could install the sling and solve the problem. I made the decision to see another urologist at Vanderbilt Univ. (Doug Milam). He did a much more detailed urodynamic study and asked me a series of questions about my level of incontinence. His conclusion was that the odds were the sling would not resolve the problem and I would be better off with an artificial sphincter.

I was comfortable with the idea of the sling surgery and that once it was installed, that would be the last I had to deal with the problem. The sphincter requires you to activate the pump every time you go to the bathroom. Anyone have any opinion on the sling vs. the artificial sphincter?

Any knowledge of Dr. Doug Milam?

Thanks, John

I am still cancer free and see the urologist every 6 months to confirm my PSA readings.

I did have a major incontinence problem from the surgery. After 20 months I made the decision to go to Vanderbilt Univ. Hospital and have Dr. Milam install an artificial sphincter in me. It has not completely solved the problem, but it has helped tremendously. I will tell you that I saw or spoke to 7 urologists before I chose Dr. Milam.

I was 49 when I had the surgery and everyone said I should not have incontinence issues! I want those considering the surgery to understand that it can happen and they need to be prepared mentally if it happens!

Also, I have recommended your site to a number of prostate cancer patients. Thank you for all you do.

John

I had the surgery when I was 48 years old. I chose the robotic surgery. The only real issue was sever incontinence, even though I did have impotence problems early on in the process. I had a second surgery to install an artificial sphincter to solve the incontinence issues. I now have minimal continence related issues and almost no impotence issues. I did use the shots earlier in the process vs. the pills for impotence and I think the shots helped me improve more rapidly.

I am 4 years out and my doctor says I am cancer free, which is great news. I don't expect any further issues or problems related to my prostate cancer, but I will have some slight incontinence issues for the rest of my life.

John

I am now 51/2 years out and cancer free, as best I know. I had a second surgery to deal with my incontinence and it has mostly worked, although I have to wear a kotex pad daily to deal with minor dripping. Based on my discussions with a number of men who have had the same surgery, I do believe the incontinence problem is much greater than the 3-4% of surgery patients my doctor told me. If you are not prepared to have incontinence for the rest of your life, the surgery may not be best for you. With that being said, I would much rather have the incontinence issue, than have the cancer growing inside me!

John

John's e-mail address is: johnhardin1 AT gmail.com (replace "AT" with "@")

NOTE: John has not updated his story for more than 15 months, so you may not receive any response from him.