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BRONZE

Robert Frick and Susan live in Fairfax, Virginia, USA. He was 64 when he was diagnosed on September 15, 2007. His initial PSA was 4.2 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c. His choice of treatment was Open Radical Prostatectomy . Here is his story.

64yr old veteran of 36 yrs in Navy, working for private company; in good health, conducting annual executive level physical, some PSA acceleration year over year from 1.2 to 2.7, June 07 PSA jumped from 2.4 to 4.2. Navy urologist called for immediate biopsy. Local urologist in Fairfax Virginia told me we should do a second PSA (3.7) , then told me to wait six months and do another PSA. DRE always negative. Navy urologist refused to take no for an answer and pulled me in for 12 point biopsy. 7 of 12 samples were positive with 80% or higher cancerous tissue on the right side near or at apex. Gleason was 7 on right side. Summarized as very aggressive form in terms of growth and potential expansion beyond prostate. I had three independent analysis of biopsy samples and all concurred with initial diagnosis of a very aggressive development on right side at apex.

Wife and I met with 11 doctors, surgeons, urologists, oncologists from four separate medical institutions around metropolitan DC area. As expected no clear message or guidance from any of them and no doctor recommended any procedure other than what he specialized in. We narrowed options to open RP (Radical Prostatectomy) or Radiation. However the aggressiveness of the cancer quickly drove us to open RP.

Chose Johns Hopkins, Dr. Alan Partin. He had done both robotic and open. Preferred open because he like to touch and feel. Cancerous tissue behaves differently and he believes it gives him an advantage. He had completed 3,000 of these. He also told me not to wait too long to decide. In my case with aggressiveness of tumor He opined I did not have six months.

RP conducted 21 November 2007. Removed all 12 lymph nodes and prostate, surgery one hour with almost zero loss of blood. Woke up in recovery about one hour after surgery complete, relatively comfortable with internal drain and catheter. Up and walking that afternoon and evening, Drain removed mid day next day and I was sent home with catheter. No complications. Pain controllable. Side effects of narcotics such as constipation resolved with healthy doses of mineral oil. I removed catheter at home on day 10 and had staples removed at clinic on day 13.

Upon removal of catheter continuous leakage, little to no blood, Kegels and tightening had no effect. All other aspects good. Recovery and back to work on week 4 for a few hours each day. collecting leakage with combination of pads and pull up diapers. At first up 3 times a night to change out to avoid leakage beyond diapers.

Returned to JHU on week six due to total incontinence. Partin conducted cystoscopy - during which he declared that his surgery was perfect and that any incontinence problem was mine due to my not trying hard enough to stop the leakage

Met with two other urologists/surgeons who opined that I had a problem and that if it continued I should consider surgery for sling and then for artificial sphincter at 6 month point - both ideas were immediately rejected.

In April 08 Discovered US TOO and went to local session in Fairfax Virginia where I met BJ CZarapata, a nurse practitioner specializing in female and male incontinence with major focus on post RP incontinence. After some exploration and initial testing we started e-stim (electrical stimulation) and low dose of Vesicare to help relax bladder. Over next 12 weeks conducted daily e-stim therapy at home with varying levels of success. Current status is: 25% to 50% incontinent depending on day, how much I move around. When sitting for more than one hour and bladder is relatively full I have good control and can walk to toilet and void normally. We have reached plateau on any more improvement. Next step is to conduct urodynamics exam and analysis to determine efficacy of sphincter, bladder and piping.

I have recently re-started physical exercise program and weight loss. Probably 30 pounds over ideal weight. Have always been physically active with biking, swimming and circuit training. My thought process is to get as much excess blubber off the stomach to allow the dynamics to work without help from pressure of excess weight.

Quality of life today is fair and getting better. Several weeks of tough going with, excuse my French, piss poor morale. Intend to fight through this for one year or more before succumbing to slings or buttons in my testicles.

I have found a couple of clinics, one in Arizona, that claims to be able to treat my case with a combination of the e-stim and additional muscular stimulation. they advertise about a 50% success.

 

UPDATED

December 2009

 

 

In August 08 I was mis-diagnosed as having chronic bladder spasms and was advised to undergo installation of a "bladder pacemaker" - cost to me US$20,000. I refused that path and continued searching for solution. In all I met with seven different urologists who all ended up saying "tough luck".

In Nov 08 I found website to a Urology Group in Norfolk, Va. (USA) - Sentara Hospital - Dr. McCammon who had provided a webcast of his efforts and good results with the AdVance ™ Male Sling. I met with Dr. McCammon, had a follow-on Cystoscopy and urodynamics test and was viewed as a good candidate for the AdVance™ in that I had good stats and the closing of the urethra around the external sphincter was uniform and concentric.

In Jan 09 the AdVance™ male sling was installed ( a simple, yet tricky installation and surgery requiring skill and deft touch to "get it right"). The morning after the surgery the catheter was removed and I have been essentially 100% continent ever since. There are no restrictions on my physical activity.

I continue to have ED and have little hope of solving that issue without surgical aid.

My PSAs have been less than detectable since original surgery.

 

UPDATED

March 2011

 

 

In January 2009 underwent installation of AdVance Male sling by Dr. Kurt McCammon in effort to resolve 100% incontinence following RRP in Nov 07. AdVance male sling has worked well resulting in minimal leakage - about 1-2 pads per day.

Continue to have severe ED with no progress using daily high dose meds. Have attempted injections periodically with some improvement. will continue to use injections and increase dosage. Urologist believes that injections will eventually work to some level of satisfactory performance.

In good health. Competitively swimming (long distance/cold water) and working toward mini - triathlons later this year. Have lost 40lbs [18 kg: 2.8 stone] in past year and will continue conditioning and weight loss program. Significant improvement in overall health using modified low carb diet regimens, daily high dose of high purity fish oil. Major improvement in blood chemistry with very low Triglycerides and excellent lipids.

Robert's e-mail address is: refrick1@gmail.com