May 2006 - During the review of my annual physical, my doctor was concerned that my Haemoglobin A1C test was elevated and we mapped out a strategy for finger stick glucose testing, diet and exercise with a follow up A1C testing every 90 days.
December 2006 - I worked really hard at the program, lost 45 lbs and indeed the A1C had a dropped 1.5 points putting me in the normal range. However, the lab was also testing my PSA every 90 days and between September and December 2006 my PSA jumped from 3.8 ng/ml to 5.1 ng/ml, a quick retest indicated a 5.0 ng/ml. My doc recommended a biopsy.
February 2007 - My urologist called with the news that I had prostate cancer, I was diagnosed with a Gleason score of 6, Stage T2C. I was on such a high after losing the weight and realizing I could control my blood sugar with diet and exercise that this really hit me like a ton or bricks. I cried (in private), did the "why me" routine, got mad "it is not fair" and then started my research determined to beat it.
My wife and I met with my local urologist and reviewed the options; his recommendation was that he perform a radical prostatectomy utilizing the "state of the art" da Vinci robotics system. As no surgery could be performed till 6-8 weeks post biopsy, I opted to continue my research and get a second opinion.
A member of my family was an acquaintance of Dr Patrick Walsh, who developed the nerve sparing radical prostatectomy technique which is still considered the "Gold Standard" for prostate cancer treatment. All other forms of treatment compare themselves to this standard. [The term "gold standard" in reference to radical prostatectomy is used mainly by surgeons and is not necessarily still a recognised term. Studies show that other forms of treatment produce similar results.]
I emailed Dr. Walsh and to my surprise I got a reply the same day, which included a portion of the second chapter of his book "Guide to Surviving Prostate Cancer". I ordered a copy of his book and made an appointment to meet with him at the Brady Urology Institute at Johns Hopkins.
March 2007 - My impression of Dr Walsh then and now is not one of a salesman pushing his particular brand of cure or his new book but a man who truly believes that curing men of prostate cancer is his calling in life; he is driven by this desire to cure and to continually improve the techniques for doing so. I scheduled my surgery with him the same day.
May 9, 2007 - I arrived at John Hopkins at 5:45 AM and as the pre-op paperwork had been completed in previous days and weeks my admission was quick and before long I was in the pre-op staging area, getting my IV. Due to some reflux issues we had determined that a general anaesthesia would be used and from previous surgery knew that I tolerate it well. I remember being rolled to the OR and then walking in and sitting on the operating table and then getting positioned for surgery. About that time the light went out.
I remember waking up in the recovery room and had little discomfort. Before long, I was then transferred to my room and my wife and sister came in to see me. I remember being hungry but they were hesitant to give me anything but a little water. I had a morphine pump and used it when I felt I needed it.
May 10, 2007 - Got up for the first time and walked down the hall, other than all the contraptions connected to me I was amazed at how well I was able to get around. I made three trips up and down the hall that day. Liquids for breakfast and lunch switched to oral pain meds and had a pretty good dinner (maybe I was just hungry).
May 11, 2007 - I was discharged and on my way home, I had read somewhere that long tee shirts were the thing for recuperation with the catheter and I had purchased a few prior to surgery. I wore the tee shirts and briefs with a pad and was quite comfortable in my recliner.
May12-17, 2007 - Things got better day by day, had stopped all pain medication by Monday and was learning to cope with the catheter and bag. Everything is a process but found I could get around quite well. I followed he catheter care directions carefully which included a through cleaning around the tip of the penis and then the application of Vaseline to the penis and the tube. I asked about antibiotic creams but the experience at Hopkins was that the Vaseline works just as well and it did seem to ease the minor irritation of the tube sliding in and out of the penis tip as my activities increased.
May 18, 2007 - The catheter came out in the morning and I sure don't miss it. They did the standard saline wash and made me clench my buttocks muscles to start and stop the urinary stream till I voided completely. I was able to attend a show with my wife that afternoon wearing Depends Briefs. Luckily I had taken an extra pair and I needed to change them by mid afternoon.
May 19, 2007 - I woke up several times during the night with the need to urinate. I was surprised to find my Depends were dry with the exception of a few dribbles caused each time I got up out of the bed and during the trip to the toilet. I couldn't stop the dribble.
May 22, 2007 - I am dry lying down or sitting in a chair, but dribble on the way to the toilet. When I am up and active I can't stop the dribble and have little need to urinate. I still seem to tire easily and my perineum is still tender but I feel stronger every day.
I am doing very well. When I started this journey over a year and a half ago, my main concern was staying alive. My latest PSA was undetectable so I am feeling good in that area.
Unfortunately the percentage "gods" didn't shine as favorably on me and I am in the small percentage of Dr. Walsh's patients that have not regained continence. I still have some hope but I have to admit that at this stage I am starting to consider a prosthesis.
I am able to obtain an erection with the aid of Cialis and can achieve a very satisfactory orgasm but with the incontinence sex is really on the back burner. I haven't found anything I can't do with a pad.
I am alive and the prognosis is such that PC will most likely not be the cause of my demise. This was not the case for my two uncles and grandfather who went untreated and died in their mid 60's of PC. I am very active in the Elks organization, Line Dance, sing Karaoke and roll around on the floor with the grandkids.
There is life after PC.
Last update I was about 15 months post radical prostectomy and dealing with incontinence, diapers and 5-6 pads per day. I investigated and decided on an artificial sphincter. I am happy to report that at about 2 months post implant I am completely dry and I am wondering why I waited so long....although I did give it the prescribed 1-1/2 years. I spent one night in the hospital and other than the feeling someone had kicked me in the balls while I was asleep I was feeling great. The ache was manageable with pain killers. I guess the worst part was the waiting, you have to wait six weeks for everything to heal before they activate the prosthesis.
I dripped a few drops the first few days after activation and have been completely dry ever since. What surprised me most was the immediate effect it had on my erectile function. I don't know why having this implant would change anything and maybe it is just my nerves still healing or maybe it is the renewed confidence level but I am now having about 65% erections where I was in the 25 to 30 % range before. Maybe your body just knows it isn't supposed to be wet all the time.
It took me a few days to get used to using the bulb that was implanted in my scrotum but now I can stand at the urinal and empty my bladder just like the old days.
My doc has me on the 5mg per day Cialis regimen and I'll update you on how that works next time.
Thanks to everyone for posting and God Bless
Just passed the second anniversary of my RRP surgery and wanted to share my progress. I have been going through a period of second guessing myself, asking all of the "what if" questions. But thanks to Terry, YANA posters and especially the research presented on the New Info Link, I remain confident that I made the right decision for me....and at the end of the day that is all that matters. My PSA remains undetectable.
The Artificial Sphincter (AUS) that was installed in October of 2008 works very well. I have to be careful where I sit as some hard surfaces can cause the actuator to squeeze just enough to release a small amount of urine but this happens rarely now that I am aware of this potential. I have never had an instance where I wet my pants or was embarrassed. The AUS actuator moves around a bit in the scrotum and depending on it's position can create some discomfort if I cross my legs or otherwise cause restriction in that area. But I can stand at the urinal with the rest of the guys and no one suspects. The AUS has made a signification improvement in my quality of life.
I am still unable to have an erection sufficient for penetration although even after two years it continues to get better, I have not given up hope. As many of you know when you are incontinent sex really takes a back burner so it wasn't until I had the AUS implant last fall that I got serious about sex. I tried very high doses of drugs with minimal help, then I tried Muse. It was a bit uncomfortable the first time I used it. I suspect part of the issue was that my penis had not been stretched that much for a long time. But after two years of no intercourse the discomfort was worth it.
As always feel free to e-mail me if I can help in any way.
Now 3 years and 3 months post op. I continue to have an undetectable PSA and I am still very pleased with the Artificial Sphincter (AUS). After the AUS was installed I constantly had a slight feeling of needing to urinate. I got used to it but my doctor suggested that I try Vesicare (solifenacin succinate). Glad that I did, it made a big difference, now my urge is normal and only when I have a full bladder.
Things continue to improve slowly on the erection front, but I do continue to see small improvements. The MUSE got things rolling and I also had success with a vacuum pump but really disliked the cold feeling the penis gets after the ring has been on a while. I am now using Alprostadil (Caverject) injections directly to the penis. The Muse pellets worked and produced a good erection but I had considerable aching in the penis and legs. While I get some of this with the Alprostadil it is not as severe and produces a better erection. There is a very mild ache at the injection site but not really a concern. Once I overcame the negative notion of sticking a needle in my penis it turned out to be rather easy and the best solution for me. Erections without any medications continue to improve and I still have hope that one day I won't require the meds.
Thanks to everyone for posting and to Terry Herbert for keeping this valuable tool available.
Life is good and no sign of cancer.
May 2012 will be the 5 year mark for my surgery. My artificial urinary sphincter has been in for 3 and a half years, works great and keeps me dry regardless of liquid intake. Occasionally if I sit on a hard surface just wrong, I can drip a little but that is rare.
Sexual function is not what I would like but actually continues to get better little by little and it is hard to say if I wouldn't be in the same situation from age alone as I was having difficulty prior. I am considering an implant as they seem to have improved greatly in the last few years.
Thank you Terry for all your hard work on this site.
I had Penile Implant Surgery in June of 2012. Combined with the Artificial Urinary Sphincter implant several years ago I am now a bionic man. My penis seems rejuvenated and not all shriveled and withered as it was before the implant. Normal feeling and sensations returned within a month and orgasms feel very natural. Both my wife and I are pleased with the outcome and the ability to resume sexual relations. As much as we both tried to tell each other it didn't matter if we could have regular sex or not an intimacy was restored with the implant. Knowing what I know now I would have had gotten the implants sooner.
Cancer, incontinence and erectile dysfunction are things of the past. The implants are working well. Occasional minor discomfort if everything gets bunched up but really a minor issue compared to pads and ED.
Started an exercise regimen, my energy and stamina have returned and I feel great. Life is good.
I am now 8 years post-surgery and doing well. Both of my implants continue to work well although I am starting to have some light spotting with stressful activity. I usually don't wear a pad unless I am going out and want additional security.
Over the last year and a half my PSA has increased to a .3 and has remained there for 18 months. My urologist doesn't feel any treatment is necessary unless it continues to rise. So, we are in a wait and see mode. Any increase is always a concern as I have an aggressive form with several relatives that have died from prostate cancer in their late 60's and early 70's. However, there may be some good news as several recent studies are indicating that normal prostate cells start to regrow in about 45 to 50 percent of men who underwent a radical prostatectomy. Apparently, the surgeon always leaves a few non-cancer cells behind and these cells can start to regrow and after many years can cause an increase in PSA.
My PSA reared its ugly head 5 years after my prostatectomy. Started slow and took 3 years to reach (.4). My urologist felt we were better to treat now than wait for the PSA to get any higher. I chose EBR and had 35 treatments. 6 weeks after treatment my PSA dropped to .16 and at 6 month follow up it is 0.05.
I went to the Anne Arundel Medical Center for the EBR treatments as they do a scan each day before treatment to be sure the bladder and bowels are not in the way of the radiation. Assuring that the bulk of the radiation hits the prostate bed. Drinking water before treatments changes the position of the bladder to get it higher in the abdomen. Had to alter my diet to reduce gas. Sometimes had to wait and try to push some gas out before treatments. Without the daily scan my bladder and bowel would have received unnecessary radiation which increases the chance for side effects.
I did have some fatigue after about 4 weeks of treatment but as I was driving an hour each way to treatments that my have been a factor. The fatigue was gone within a few weeks post treatment. Started having occasional urgent diarrhea about 6 weeks post treatment which has since gone away on it's own.
My artificial sphincter is working pretty well with very slight leakage during stressful activities. Implants are working well.
Bob's e-mail address is: robertdcolemansr AT gmail.com (replace "AT" with "@")