YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Bob Coleman and Joyce live in USA. He was 61 when he was diagnosed on February 2, 2007 His initial PSA was 5.0 ng/ml and his Gleason Score was 6. Although he states that he was staged T2b or T2c, in fact it seems from his story that he should have been staged T1c. His choice of treatment was Radical Prostatectomy. Here is his story:

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. *

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.

 

UPDATED

August 2008

 

 

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.

 

UPDATED

December 2008

 

 

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

Bob

 

UPDATED

May 2009

 

 

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.

Bob's e-mail address is: robertcoleman@hughes.net

*FOOT NOTE: 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.