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PROSTATE CANCER SUPPORT SITE

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Peter Wenz and Helene live in Illinois, USA. He was 57 when he was diagnosed in March 2007. His initial PSA was 5.2 ng/ml, his Gleason Score was 3+4=7 and he was staged T1c. His choice of treatment was HIFU. Here is his story.

After diagnosis, I did intensive research for about 6 months. Even though all biological type tests indicated that I had a very slow growing and confined tumor. Never the less, I had a 3D-color-flow-doppler-ultrasound done in August of 2007, to get a visual on the tumor. They found that I actually had two tumors, and the one we didn't know about was in the Apex area of the prostate, and was not far from the edge, although still confined. I was told that as a result of it's size and location, I had "very limited treatment options". The only thing I was offered was external beam radiation or drug therapy.

Having already done a lot of homework, I checked with two different doctors in the USA that did HIFU (outside the USA of course) and was told that not only was HIFU an option, but it was the treatment of choice for tumors in the Apex area. So now the only thing I needed to decide was which of the two competing HIFU technologies to go with, and where to have it done.

I decided to go with the Ablatherm for two reasons. One was that it had been around longer and had a solid history of success going back over ten years. The second reason was that I wanted to have it done by a facility that had extensive experience in doing HIFU, which of course means that they used the Ablatherm.

I almost went to the Mapleleaf Clinic in Toronto, Canada which has an excellent reputation and does good work, but I ended up going to the Urology Klinik of the Munich Hospital in Harlaching, Germany. Their staff has done over 1,600 procedures, and had a 93% cure rate at the 5 years mark.

The main reason I went to Germany instead of Canada, was I had heard from a number of people that had already had HIFU, that if one had a TURP done prior to the HIFU, one would have a much better and easier recovery. The Toronto Clinic does not do TURPS, which means I would have had to have it done here at home and then go to Canada for the HIFU a few weeks later. In Germany they do the TURP and then the HIFU during the same operation. They give you an estimate as to what it will cost, and you have to pay that in advance which I did via my credit card. Then after I got discharged they figured out what the total actually was and refund the excess back to my credit card. The net cost in US dollars was about $18,000 not including air fare, and that included the cost of my wife staying with me.

I already knew that HIFU had very few and very mild side effects, and that the procedure itself was completely pain free. And I found that to be true.

When I woke up after the procedure I had absolutely no pain. I had a supra-catheter (through the abdomen) as well as a regular catheter. After about three days they removed the penile catheter, and had me start trying to pee normally. Then on the 4th day, the doctor on duty had the supra-catheter taken out before verifying that I was able to void normally, which I wasn't. Thus they had to put a penile catheter back in, which I then had to keep in place for two weeks. All because a hot shot doc had the supra-catheter removed too soon! I was in the hospital for a total of 7 days, and my wife was able to have the second bed in my room, so it was almost like being in a hotel!

In any case, I had the catheter removed by my urologist in Chicago two days after I arrived back home, which was about 2 1/2 weeks after the procedure. Initially the stream was REALLY slow, but it was working. I also did poorly on the flow test and was retaining some fluid. Frequency was also an issue, but then again I was drinking 2 to 4 quarts of water per day to keep things flushing out.

I got a urinary tract infection about a week after that, so went on an antibiotic for a week and that cleared up. Within a month, I was only getting up about once a night, but during the day it was anywhere between 30 and 75 minutes depending on when I last drank water.

After about 3 or 4 weeks I determined that sexual function had been maintained. (I had nerve sparing HIFU done on the right side of the prostate.)

My stream got steadily stronger, and on two occasions (at about the 5 and 6 week mark) I thought I was starting to plug up because it was slowing down during the course of the day, but then suddenly there was a rather large "Chunk of stuff" that came shooting out, and the stream was instantly stronger again.

At seven weeks, on November 8, 2007 I had a follow up with my urologist and my first PSA test. This time I passed the flow test with flying colors, and was not retaining urine. When I got my PSA result, it was UNDER .1 !!!!

That's where I'm at as of today. Recovery has been excellent thus far, with minimal side effects. I only have mild and occasional stress incontinence that I'm told will go away over the next 6 months or so. Wearing pads is really no big deal when one considers what might have been, and what others have had to deal with.

Regardless of what the future holds, I know that I have been truly blessed, and thank the Lord Jesus Christ for the blessings I have received.

 

UPDATED

January 2008

 

Since the last post, I have had some sloughing of tissue, which has caused the stream to periodically get stronger and weaker. All was OK until early December 2007 when my stream slowed down more and more until mid January of 2008 when I was almost completely blocked.

I headed for the Urologist's office, who diagnosed stricture in two places, one at the bladder neck. He was not able to get the scope in all the way so I had dilation which was very painfull! I left with a catheter in place until this coming Tuesday, at which time I hope to find out what the future might hold for me in overcoming this setback.

 

UPDATED

March 2008

 

After the catheter came out, all was well for about one month, when I noticed the stream was getting a little slower again. This time I didn't wait until it was completely closed. I had a second dilation in late February, but this time it was NOT painful, and I didn't need a catheter afterwards either. It is now mid March and all is still OK. My urologist is hopeful that since my strictures are not that bad, dilation alone might keep things flowing, and also that the frequency of dilation will get also get less and less.

More importantly, my second PSA test again came in at UNDER .1 !!! Needless to say I am well pleased.

 

UPDATED

January 2009

 

Considering it's been almost a year since I posted an update, I decided to do just that.

Thank God I don't have much new to report. My PSA tests over the past year have all been undetectable. I have no other side effects as a result of the HiFu, so needless to say I am thrilled with the outcome. I have continued with the vitamin and supplement regimin.

In light of the most recent findings that Testosterone is NOT harmful for PC, (nor is it the cause) I am currently looking into going on Testosterone supplementation. **1

I'll report again at a later date.

 

UPDATED

November 2009

 

 

Thought it was time to post another update.

I had a PSA test in May of 2009 and another one last week in November of 2009. Both were under <0.10 so all is still well. I have NO after effects either. I am well pleased with my outcome as you can imagine, and am just glad to have this behind me. I pray that it will continue to be God's will that things will remain this way in the future.

I have not gone the Testosterone supplementation route as I had mentioned in my last update, mainly because I have not found a doctor to work with that is knowledgeable enough about T and PCa for me to trust.

I'll keep you posted.

Peter's e-mail address is: petewen@comcast.net

NOTE 1: This is a contentious issue and may doubts have been expressed about some of the conclusions regarding the part testosterone plays in the development of prostate cancer. Anyone proposing to use testosterone supplements would be well advised to investigate the issue throughly and to discuss the issue with their medical advisors. It might be of interest to read the story of Ron Hard who was using a testosterone supplement.