HIFU CASE NOT THE BEST RESULTS

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mathew j
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/17/2009 6:57 PM (GMT -6)   
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
Thomas

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 3/17/2009 7:18 PM (GMT -6)   
HIFU is now undergoing clinical study in the US.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/18/2009 12:18 AM (GMT -6)   
Thomas,
I am sorry for the SE's but it looks good on the cancer. I still don't have enough data on the procedure but that will be coming soon. It is a trial here but there are stringent conditions to become elected for it. I have heard that Europe is having success, and I believe it is at least as successful as other ablation therapies. The jury is out on the experience of doctors using it, and the long term results...

Thank you for the post. Welcome to HealingWell. I hope you stay and deliver the future results and take part in our forum...

Peace,

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/18/2009 6:54 AM (GMT -6)   
Gee Thomas, sorry you had to go through all that.

I sure would'nt want to be the test rabbit for HIFU when they approve it here.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


mathew j
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/18/2009 9:43 AM (GMT -6)   
Thnks for your support...
Am still bullish on HIFU..think it has something to do with the 2 extremely large pieces that came out at 2 months. Seems like I am the only patient that has had this outcome. Maybe getting a biopsy so close to procedure (5days prior)?
A cysto in early May might provide some answers, will keep you posted
Thomas

Age 64
pre op psa 9.5
Gleason 3+3=6, seminal invasion
HIFU Oct 24th 2008
psa 0 @ 3mo

mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 3/19/2009 2:14 PM (GMT -6)   

It is so difficult to sort out the pros and cons of prostate cancer treatments.

I initially scoffed at this HIFU treatment because it had not been approved\available in the U.S. I later learned that it has been used successfully in Germany, Russia, China, England etc. for years and that the reason it has not been approved in the U.S. is possibly related more to the self-serving lobby of surgeons and radiotherapists rather than the efficacy of the procedure.

And that shouldn't surprise anyone given recent disclosures involving power and greed in society today.


 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


mathew j
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/19/2009 5:47 PM (GMT -6)   
You are right, although HIFU has been performed elsewhere for years, FDA does not accept clinical trials & results from other countries and will not approve until they have done trials of their own which usually takes 3 or 4 years.
Thomas
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, April 22, 2018 12:28 PM (GMT -6)
There are a total of 2,954,264 posts in 324,098 threads.
View Active Threads


Who's Online
This forum has 162152 registered members. Please welcome our newest member, Rada96.
307 Guest(s), 4 Registered Member(s) are currently online.  Details
19tarpon47, ppm guy, 1hopeful1, 8L8L8