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John H and Ann live in Alabama USA. He was 48 when he was diagnosed in January 2009. His initial PSA was 2.9 ng/ml, his Gleason Score was 3+3 and although he does not state his staging, it seems likely he was staged T1c. His choice of treatment was robotic surgery. Here is his story.


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

 

UPDATED

May 2009

 

 

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.

 

UPDATED

July 2009

 

 

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.

 

UPDATED

December 2009

 

 

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?

 

UPDATED

October 2010

 

 

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

John's e-mail address is : johnhardin1@gmail.com