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.
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.
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.
It has been a little over four years since Open RP. I just turned 69 and am in good health. Urinary incontinence is drops per day. I wear a pad to eliminate any embarrassing wet spots. The Advance Male Sling works extremely well. Just finished a move and lifted many heavy items without problem. I do get small leakage if I get physically exhausted. I do change out pads if I get sweaty to avoid skin irritations. ED unresolved. Went to max dose with injections without success. I did have some ED prior to Prostate cancer and I believe that plays a big role.
I have normal procedure PSAs about every six months and all remain less than detectable. I did have a major kidney infection, hospitalized for four days with I'VE and oral antibiotics. Followed this with three general anesthesia to install kidney stints and then laser stone and remove from both kidneys. Other than occasional torn muscles due to my physical conditioning I am in great health.
I am religious in getting a full extensive physical annually including periodic colonoscopies and in depth blood anlyses.
65 yo active male, no illness - August to November 2007: Detection Via PSA>4.0, no other indicators. Twelve point biopsy indicated concentration of cancer in lower right apex about to extend outside prostate capsule. PSA acceleration about 1.0 per year for previous three years. After meeting with 11 different oncologists, robotic surgeons, urologists, decided on open RRP due to aggressive nature of indicators. Chose surgeon, Alan Partin, JHU because of his extraordinary experience and success records. Declined robotic surgeons who had limited records but claimed miracles. Dr. Partin had tried robotic and stopped due to inability to do it better. He now does some robotic due to advances in technology and equipment. Gleasons 4+3 pre and post surgery.
Dr. Partin assured me that "he got it all". Was left with 100% incontinence probably due to mass removed and being 1 in 1000 who just can't close off urethra. Studied, treated and tried everything for one year and then found Dr. Kurt McCammon ( Norfolk, Va) who was having great success with newer designed AdVance Sling. Testing indicated I was a good candidate and in Jan of 2009 had Sling installed. Followed lack of activity/ motion rules for six weeks and to date leakage has stayed at small amounts. Wear 2 pads per day for hygiene reasons. Golfing and long walks will cause increased leakage as will alcohol consumption and tiredness.
ED was present before surgery and all methods, except implants have failed to solve ED.
I do not believe in or do ultra sensitive PSAs. What action would I take with a reading of 0.01?
Very satisfied with quality of life even with ED. An erection in the grave does not do me much good. Would not have taken any other path.
My advice: Be the smartest one in the room. Find the most experienced and successful doc. Talk to as many docs as you can. Make a list, compare and decide. Never look back. Understand the options you have if decision one does not "get it all".
Leasons Learned: any PSA >zero has meaning, PSA acceleration is a critical factor. Life and family are far more important than an erection.
71 YO Healthy Male, diagnosed via PSA and confirmed via autopsy in October 2007. Five Years, Six Months and remain Cancer free. Doctor Alan Partin had assured me he " got it all" during Open Radical RP without robotic assist. I am told he now uses robotic assist in many cases depending upons specific procedure. I have lost many friends due to prostate cancer and I am devastated with the abhorrent Prostate Cancer for Veterans and poor quality VA hospitals using archaic procedures and untrained or poorly trained doctors.
I am considering a Penile implant for ED because without that intimacy, my wife (married 42 years) and I age we tend to lose the necessary intimacy so important to a happy marriage.
i remain in good health and have executive style physical annually. Only physical complaint is a freak traumatic fall down a flight of stairs that resulted in complete rupture of left Quadracep tendon and muscle. Surgical repair went well. Aggressive physical therapy resulted in a re-tear and separation of tendon from Patella. Repair was completed in April 2014. With a series of stem cell treatments with PRP. Now fully healed and on recovery to full leg strength.
71 YO Male; diagnosis of "aggressive" prostate cancer after 12 point biopsy on October 2007; annual physical in August 2007 revealed a PSA acceleration and measurement of 4.2ng/ml. Visited with or briefed by 11 Medical care physicians. Each doctor preached his specialty, but ony one provided a comprehensive analysis, possible treatments and prognosis.
Dr. Alan Partin, who is well know as a protege of Walsh , re affirmed aggressive nature of biopsy results and as he departed our session he quipped: "Don't wait too long to make a decision!" When questioned about his comment his answer was brief in that I had an aggressive form of the cancer and that it was dynamically developing and about to grow beyond the magic prostate shell and probably spread rapidly. We did surgery at the earliest opportunity and after doing extensive research I chose Open RRP based on the following factors:
- Dr. Partin's proven track record
- the aggressive form of the cancer
- the fact that surgery is not an option after radiation treatment
Dr. Partin informed me one week later that "we got it all".
Following removal of catheter I was immediately 100% incontinent for 14 months. I received very little assistance in resolving and I also was mis diagnosed numerous times as to the cause. Through my own research I discovered a Webinar on the AdVance Male Sling provided by Dr. KUrt McCammon working out of the Sentara Urology Clinic in Norfolk, Va. Following our meeting he recommended a urologist close to my home in Northern, Va and we then conducted a scope and urodynamics procedure to ensure I was a candidate. That testing provided evidence that my secondary sphincter was closing uniformly but would never close completely.
In Jan 2009 the AdVance Sling was installed by Dr. McCammon and I have been only slightly incontinent with drips and small squirts during physical activity. The surgery is straight forward, but the success depends entirely on the exact placement, at the exact pressure and the six week healing period is carried out.
To date I am very active, some spine and leg orthopedic challenges, now resolved, have been completed and I am in very high state of strength and aerobic health. My activities include long distance cycling and long distance competitive swimming, golf and other sports.
My message is that the patient must be the smartest person in the room. You do not need to know the answers, but you must ask all the right questions and ensure you have multiple opinions including short and long term prognosis, statistics of your treating doctor and staff over a long period of time and also use the various support web sites to gain a detailed understanding of the technology, capability and success of all the forms of treatment. Most important to me are:
- PSA history, including acceleration from any numbers greater than zero
- the details and diagnosis, prognosis based upon biopsy
In my opinion I advise you to Avoid the rapidly changing popular notions and trends of treatment that have little to no history Of success. I have gone to way too many funerals for men who chose a homeopathic or the magic of robotics when the physician was inexperienced.
I chose life over incontinence and ED issues. I resolved the Incontinence, but have not recovered from the ED. I can live with that. I see far too many cases when a man's decision is based solely on ED outcomes.
Minor incontinence continues. ED is total with no improvement despite trying everything except an implant. The Advance Male Sling installed As described in my record functions well with some indications it may be allowing slight increases in leakage. Using 2-3 large pads daily. No leakage sitting or sleeping. PSA remain undetectable. Active lifestyle with excellent Quality of life. Intend to do a checkup/ follow-up with surgeon who installed AdVance Male sling to determine if it is time to conduct "a replacement sling" surgery (original sling remains since it is permanent.)
Robert's e-mail address is: refrick1 AT gmail.com (replace "AT" with "@")