New here. Shook up and looking for the urologists who has done the most Prostatectomies in Sarasota Florida?

[Fleejoseph]

First time here. After three HIFU’s starting in 2009 PSA is rising. Have some mild incontinence, waiting for biopsy report on Monday. Doc says I’ll need radiation or prostatectomy. Both have high risks of severe side effects after three HIFU’s. I need to find the best surgeon or radiologists I can.

[Tall_Allen]

While any kind of salvage has worse side effects than primary therapy, I strongly urge you to not pursue salvage prostatectomy. One of the world experts in brachytherapy is John Sylvester in Bradenton. He can apply the seeds focally just in the areas of recurrence to minimize the damage. If you require whole gland salvage, you may be able to talk Debra Freeman in Tampa into doing it (this is a non-standard therapy). If not, you can probably get it from Donald Fuller in San Diego.

[Fleejoseph in reply to Tall_Allen]

Thank you so much! Can’t thank you enough. I will call Dr. John Sylvester’s office tomorrow. I will consider, if I qualify as a candidate, for the immunotherapy modulation trial he is involved with. Are you familiar with it? Forgot to mention 3 HIFUs (last one in Oct. 2016) have made prostate calcified and lots of scar tissue resulting in recurrent bladder neck stricture (7 procedures in past 7 years to clean out stones and open things up), last one four months ago. Very obstructed now, but 2x daily self cath #14 is keeping the weak flow going. One urologist said just have to keep getting it scoped out every few months until it settles down. Not sure that will happen based on history. Any thoughts on urethra reconstruction? Back to the cancer. l get biopsy result March 2. Recent PET CT showed no cancer outside prostate (PSA 3.6 — so may be too low to show anything, but have had so many disappointments on this journey that any positive is welcome, albeit cautiously). Recent MRI showed suspicious area so urologist thinks Gleason 7 or higher may be the hand I draw. He feels radiation would be less risky than prostatectomy. Another has the opposite view. Minor stress incontinence now. Don’t look forward to thought of wearing diapers at 65 and the impact on quality of life. Rectal damage also a concern with any salvage treatment. One urologist described situation as “horrible.” Another said “You’re between a rock and a hard place.” Not whining, just passing on how complicated the situation has become. You have provided more info. than the doctors, so thank you again.

I will keep Debra Freeman Tampa, and Donald Fuller San Diego’s names in my back pocket too. I can’t thank you enough! You have given me some hope.

[Tall_Allen in reply to Fleejoseph]

Hopefully, the cancer is just localized to one place that he can stick a few seeds in without further damage to the urethra or adjacent organs. Hearing about your situation, whole prostate treatment with radiation might make it worse.

I did talk to one guy whose uro used collagenase injections into his urethral stricture to dissolve the scar tissue. He expected it to take several treatments.

I don't know about his immunotherapy trial.

[Fleejoseph in reply to Tall_Allen]

Thank you very much. Most appreciated. Down here in Sarasota area until April so will see if we can find anyone who knows about the collagenase injections — that would be much better than reconstruction! One doc hinted/suggested maybe prostatectomy would take care of and “clean up” the scar tissue issue and get cancer out at same time. Most of the calcification is around the urethra.

BUT if surgery carries the greatest risk of severe incontinence, then scratch that and start looking for radiologist here who is experienced with 2-3x failed HIFU situations. Will be talking to Dr. Dattolli next week via phone. He is in Sarasota. Monday we find out results of biopsy. We sold our house three years ago in Nashville and now travel full time in our RV....so we are mobile and can go anywhere for best treatment. Thank you again....appreciate your wisdom!