My
Cancer Trek
aka
The Tokyo Roast

On 11/10/06, at age 59,  I found that I had       prostate cancer. 
As the most common cancer in men, it kills 15% of those who get it.
My case, a most uncommon one, led me to Tokyo.
I hope my story can help others.

Conflicting Advice - No End in Sight

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This entry was posted on 6/5/2007 12:38 PM and is filed under Recovery, Complications.


Here’s the problem.  My urethra wall seems to be damaged and there is no clear urethra channel due to blockage by slough (dead prostate material).

Here’s the bigger problem.  Every doctor I talk to has dramatically conflicting advice.

Here’s the biggest problem.  A mistake in handling this could have long term and devastating consequences.

First some education.  There are three types of catheters:
 
1.    Supra pubic catheter – Enters the body through a hole in the belly and the tube runs to the bladder where it is inserted through the creation of another hole.  There is no bag.  You try to urinate normally and then any remaining urine is let out through a valve.  This is the one they put in during the operation and it was removed a week later.

2.    Foley catheter – the tube comes from your bladder and out the penis.  It feeds into a bag that is strapped to your leg.  That is what I have had for the last three weeks.  I had it earlier but had to get it removed due to severe bladder spasms.

3.    Intermittent catheter – Hang in there guys, I know this sounds awful.  This is the one that you put in yourself if you are not able to urinate.  You basically stick the tube in your penis and run it up to the bladder.  You do this every 3 to 4 hours if you are not draining enough urine.  I had this for a week after the first Foley catheter but had to stop because it got to clogged with slough material.

OK, here’s the conflicting advice.  Listen to how scary this gets.

My present urologist wants me on the Foley for 4 week segments and to send a scope up the penis at the end of each segment to see how the urethra looks.  His partner had put me on the intermittent catheter when I had the spasm problems but then switched me back to the Foley after scoping me and seeing how bad I looked.  He said I may be on a Foley catheter for 6 months to a year.  He said infections are inevitable and we will have to try to treat them as they come.  He said he is not sure if the membrane will heal or if we may have to look at a surgical procedure a year from now.

A neurologist who is an in-law and has dealt with many patients who required catheterization says to get the Foley out of there.  He says it will inevitably cause an infection, which could be serious or even fatal.  He says I need to be on intermittent catheterization.

A retired urologist who runs a non-profit prostate cancer organization in California says never use intermittent catheterization.  He said the risk of poking it into the wrong place is too great.  He said you could even perforate the rectum wall, which would create an extreme and possibly life threatening medical emergency.  He also said not to use the medicine (ditropen) that I am on.  It is used to prevent spasms but he says it relaxes the bladder, inhibits normal functioning of the system and might prevent the expulsion of the slough material. He also says that the Foley catheter is a foreign object in the urethra and therefore inhibits healing and blocks the expulsion of slough material.  

A group of physicians in Europe put out a paper on sloughing and said that intermittent catheterization should be the standard approach to dealing with the problem after ultrasound or cryosurgery.

My surgeon in Japan says I should either have a Foley catheter or should get a TURP done.  The TURP is a surgical procedure where they go into the urethra and scrape out excess material.  My local urologist says he would not do that because with the damage to the urethra membrane wall, he wouldn’t know how far to scrape.  The urologist in California says to avoid any surgery if possible because of the risk of incontinence.  He said that I have a real risk right now of creating long- term incontinence issues.

Here are the key words that I heard in all that mess:  infection, death, and incontinence.  It seems any path that one of these doctors recommends is condemned as highly risky by another.

I could be scared, in fact, at times I am.  Will all this end well?  When will it end?


 

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