Here is a HIFU case not like the brochures!
I live in Montreal Canada and was able to have the Sonablate HIFU proceedure walking distance from my home (Oct 25th, 2008).
My PSA rose gradually over a period of 8yrs from 4 to 9.5. During that time, I was reluctant to do a biopsy and opted for watchful waiting. Oct 8th 2008, I did a Power Doppler 3D non invasive ultrasound that detects blood flow in the prostate. Findings showed high activity that indicated presence of cancerous tumors in the prostate and possible invasion to the seminal vessels. An mri performed the same day showed capsule containment and no external invasion other than the seminals.
After extensive research and coming to terms with the situation, I chose HIFU for all the reasons discussed in this forum.
Most surgeons in Canada will not do the proceedure without a biopsy so my choice was to go outside the country or do a biopsy and get my treatment close to home. I chose close to home, had the biopsy (Gleason 3+3=6, 4 cores out of 12) and HIFU 6 days later. My surgeon assured me that having HIFU such a short period after a biopsy posed no problems as the prostate would be destroyed during the proceedure.
The HIFU itself was uneventful..no post pain, some discomfort sitting (on a tennis ball) and some swelling.
After 2 weeks draining from a catheter, I began voiding through the urethra by clipping the catheter shut and trying to pee normally.
At first very slow and with burning, voiding gradually improved and the catheter was removed on week three.
At that time a urinary track infection developed that took 7 weeks and 5 antibiotic treatments to cure. During this period, the urinary stream became very weak (down to a trickle) and voiding was not complete..urine remained in the bladder and probably helped the bacteria survive the antibiotics for so long.
By December, voiding was very painful, forced and extremely slow culminating on Dec 25th at 12pm, when I blocked completely.
After 3 hours of painful pushing and attempting to urinate, a piece (presumably prostate) the size of half a walnut came out, followed by a gush of urine and immediate emptying. During the following 3days, flow was as strong as I ever remember then a week later the same thing happened again, stream down to nil, blocking, and another piece the same size.
Although I had not experienced incontinence till then, after the first piece came out, I became incontinent (2 months after HIFU).
I have been completely dry at night and sleep through 8 hours, also dry when sitting down. When I get up I start dripping and need to rush to the bathroom. Dripping is continuous with walking, standing and physical activity like tennis etc. I go through 2 to 3 pads per day..by the way, am 64, in great shape and very active with no previous problems prior to this.
We are now March 16th, 5 months after the proceedure, 3 months after the pieces came out, improvement has been minimal but better in the morning when I can come out of bed with a full bladder (550ml) and walk around dry for 10 or so minutes before dripping.
During the day I am able to retain some urine so bladder fill faster than I dribble. Although my stream was very strong after the pieces came out, it gradually weakened back to the present slow trickle with some interior burning discomfort.
My doctors involved say some cases in HIFU can be like mine and I probably have some scarring, blockage as well as a weak sphinter (I do my kiegles every day). They advised waiting 6 months till I heal before doing a cyctoscopy to have a look-see(end of April). One Doctor says I may need a sling.
I have spoken with HIFU head office on many occasions and they have told me infections are very rare, and large pieces like mine are undocumented in all their HIFU cases. The prostate is supposed to shrivel over several months and pass through as small pieces and brown sludge...not my case. The good news..PSA=0 at 3 months.
Well, this is my story..I wanted to share it as many men are looking at the HIFU option... there is so little written about it as it is new in North America..
open to any comments, hope this will help some