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HIFU side effects

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Subject: RE: HIFU side effects
Date: 04/17/2008

Hi - I was diagnosed with PC in February 2008 at age 40.  I was leaning toward HIFU and discussed it with my Doctor.  He suggested that it was a new procedure, and although he did not advise me against it, he did suggest that I research it further. 

I live in Winnipeg, and knew that the Maples Surgical Centre had purchased the Sonoblate, but I did want to be one of their first patients!

How are you doing since the procedure and your posted message?

 I am meeting with a second Urologist tomorrow morning to discuss options.  I am considering watchful waiting, but feel that something more aggressive is inevitable - probably don't need that cloud over my head.

Did you have any concerns about the treatment before having it, or do you have any now?

Hope you are well.  Thanks

Subject: RE: HIFU side effects
Date: 04/26/2008

I was quite confident that this method is the best option. From my research I found that all the other techiques had significant side effects with which I did not want to deal. I still feel that way as I am fully continuent. Even with the problems I am managing and slowly progressing. Prostate type procedures I am realizing are a MAJOR operation that takes alot longer to recovery. I have had several surgeries on the knees, shoulders and hernia operation and all these were easy to go through recovery. Quite simple just do the few simple exercises to regain movement and mobility but prostate operations are in the middle of the urinary and reproductive systems and they have to function daily even with the major disruption. With knee and shoulder rotary cuff repair one can take it easy and favor the injured part.

      Erectile function I will not know for awhile but Dr. D stated that the nerve bundles were quite visiable and separated from the prostate so I expect no problems from that end. The reason it is going to take time is that I was on hormone therapy to reduce the prostate size and the Zoladex implant in my abdomen was finally finished on April 22nd. I was supposed to get the next implant on that date.

    The people in Winnipeg were good but I don't have a lot of comfort with the post operative help that I received. I almost wonder if the Toronto Sonablate HIFU might have been better. They apparently do a large number to the point that they were having trouble meeting the demand which resulted in the additionaly three Canadian centers being established. Unfortunately, the travelling and cost could be a problem.

Here is additional update from March 29th to today April 26th, 2008.

Update April 26th, 2008

 

            It is now almost 4 weeks since my treatment. The brochure that was handed to me before the treatment stated that I should drink between 8 to 10 glasses of water. I believed that a glass of water was 10 to 12 ounces which works out to 4 to 4 ½ litres. I started the first step of urinating through the penis by closing off the suprapubic catheter for 1 to 2 hours. I never reached more than 1 ¼ hour. Then I would urinate followed by emptying the bladder through the catheter. Once the stream was pretty good I started to measure the volume. The Winnipeg brochure stated that one had to eliminate 80% through the penis for 5 days and have at least 2 hours between urinations. Once that was reached I could sleep without the catheter and hopefully I would start to get back to the normal number of times I get up to urinate during the night. Unfortunately, I found that I was getting no where near the 80% but then decided to wait 2 to 8 minutes after the first urination to urinate again. The two urinations were totaled and I was frequently reaching the 80% or better. When all the conditions are met I could get rid of the catheter however the two hours between urinations were a major problem. I phoned USHIFU. My best time was about 1 ¼ hours and most times were under an hour. I talked to the nurse at USHIFU and the glasses were 8 ounce glasses not 10 or 12 ounces that I interpreted. That reduced my in take of water to 2 ½ litres from 4 litres. At the end of the second week I started to get pain during urination and pain across the abdomen in the area of the pubic bone. I contacted the nurse in charge of my case and she did not give me much information but only referred me to Dr D. He did not get back to me but the nurse did in 4 days. During the wait my catheter got plugged for the second time. I was off to emergency and the doctor did some manipulation of the abdomen wall as she was feeling how full the bladder was when the urine started to flow again through the catheter. At home again I contacted the USHIFU to get the name of any urologist near me as the family doctor had prescribed some test which were normal so she could not determine my problem. The nurse passed me to another nurse-administer who had a list of urologists in my area. While on the phone the nurse became aware that I was a Sonablate patient and I informed her that I was not getting any support for my problems. She immediately gave me a name and phone number of a nurse in Toronto who had 25 years experience with HIFU. I contacted this nurse who is responsible for the Sonablate CANAM HIFU and got all my questions and concerns answered. I gave her medical information on me and she told me that my prostate was so large before the procedure that I could expect some pain during urination. The prostate is still inflamed. She gave me the idea that I could get anti-inflammatory drugs as well as an anti-spasmotic, the Detrol LA, to prevent bladder spasms. She also stated that I should be only drinking 48 ounces of water (6 oz. glasses) so my water intake is reduced to 1.5 litres and I am now able to reach and even surpass the 2 hour mark between urinations. Things significantly improved, until yesterday when the suprapubic catheter plugged again. I tried to get the catheter going by drinking and manipulating the abdomen but no luck. I started to get the pain during urinations and the volume of urine decreased, frequency increase (every 10 minutes) and the volume voided decreased to 10 to 15 ml. This time the emergency put in a urethral catheter which is working but now I am in the process of trying to figure out what to do to replace the suprapubic catheter. I contacted the Toronto nurse and discovered that once the catheter is plugged the build up of urine in the bladder will cause the inflamed prostate to swell again reducing urine flow so that is a normal reaction.

       I have no incontinences but do have urgency to go but that is decreasing. The urgency is common for HIFU patients so that is not a problem. I can make it to the washroom with only the odd time when some urine will flow before I get on the toilet.

 

Subject: RE: HIFU side effects
Date: 07/24/2008

I've been meaning to get back to this board to thank all of you for taking the time to respond to my original inquiry.  My father has found a lot of support through various groups and we were thankful for the advice received here.

 My father ultimately went with the Maple Leaf HIFU group in Toronto and I'm pleased to report that his PSA is negligible and he experienced only minor side effects.  He says that the catheter was definitely the worst part of the experience, but I figure that's a small price to pay to eradicate cancer.  

The staff up there was great and I'm glad we had the chance to access the technology in Canada.  It's crazy that HIFU isn't available in the US yet.  I just think about how many men are missing out on this option because they can't afford the price.  

Again, thanks to all of you for your time and support and my best wishes to you all. 

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