I noticed what appeared to be some blood in my urine in January of 2004, went to my doctor in early February who then referred me to a urologist. Following a battery of diagnostic procedures (dre, PSA;, alkaline phosphatase, bone scan, chest x-ray, cystoscopy, and finally a transrectal ultrasound-guided biopsy), I was given the devastating results on March 7, 2004.
My urologist (also a surgeon) recommended RRP, but suggested I check out all of the other options (i.e. radiation, cryotherapy, brachytherapy) available before making a final decision. I then spent the next 3 weeks deep in extensive research online, and talking to several different men who had experienced varying treatments for this, trying to find the answers to all of hundreds of questions I had about this life-changing disease. None of which sounded very promising considering all of the different side effects depending on which course of treatment you choose.
I then discovered Dr. Mani Menon at Henry Ford Hospital in Detroit, who is one of the best LRRP surgeons in the world - right here in my own back yard (14.3 miles to be exact). The more I read, the more anxious I became, this almost sounded too good to be true... but it was. I asked my urologist for his opinion concerning the VIP (Vattikuti Institute Prostatectomy) surgery and he actually said that if it was him, this is this procedure he would choose. You can't get a better endorsement than that!
My initial consultation with Dr. Menon was on April 7, 2004 and my surgery was scheduled and performed on Thursday May 27, 2004. Two hours after surgery, I was up out of bed walking up and down the halls of Henry Ford Hospital, was back home the next day, and out walking around the neighborhood on Sunday, the 30th.
I had the catheter removed on Tuesday, June 1st, and then let nature take over the healing which is an up-and-down process. Throughout the first month I was very discouraged by the incontinence, then by July I noticed a marked improvement, and by August a huge change (about 80-90% continent), and now I'm 100% continent. No pads at all. Although, if I suddenly sneeze or cough, I may get a drop or two but I can live with that considering the alternative.
PSA check on July 26th indicated a reading of 0.02 ng/ml which completely devastated me, but he said that this is not a rarity following RP. The following PSA check on November 1st was undetectable. (Woo-Hoo!!!) So now I can breath again. My next PSA test is 01/31/05, I'll keep you posted.
Potency: Still not much going on the area of sexual function, although I know the nerves are intact. I've been able to achieve orgasm (with a lot of work and concentration) but all indications are that this should return within 9 to 12 months according to the data collected on Dr. Menon's patients. These are much better results than with the "open type" RRP operation, which usually takes at least 18 months for any signs of life to return down there. Patience - patience - patience.
I lost my wife in 1998 to liver cancer, and finding another partner now is going to present a real challenge for me given my new physiology, but I'm going to stay optimistic... hey, I'm still breathing!
Also - after finding this web site, I don't feel so alone.
It's been one year since my surgery (May 27, 2004) and this is my first follow-up posting to YANA.
On my initial post-op consultation last July, I received the results of the pathology report and got the bad news that the cancer was not confined within the gland.
What this means is that some of the cancer had penetrated the capsule of the prostate and escaped into the seminal vesicles. Consequently, my pathology results have reclassified my staging at T3b, the second highest from the top, which is T4.
Given these numbers, I'm told that I have a 20% to 30% chance of reoccurrence.
Optimistically speaking, I guess that also means I have a 70% to 80% chance it won't come back.
So for now, it's back for a PSA test every 90 days, with the hope that I'll fall into that 70%-80% category.
I received my latest PSA results on August 3, 2005, and thankfully it was less than 0.02 ng/ml (or undetectable). As I stated in my last update, I'll have to endure this roller coaster ride every 90 days - forever. So consequently, I've re-rearranged most of the priorities in my life over the past year. That which used to be important to me no longer is; and that which used to take a back seat has now moved forward to the top of my list.
Life is too short to be angry; those that you love cannot be replaced; and happiness is not defined by what you have - it's defined by how happy you are with what you have now! Happiness is a state of mind. I am happy and thankful to be inhaling and exhaling, one day at a time.
First of all, my apologies, for not updating my status for over a year. I guess I just assumed that no news was good news. But following an email from a friend on this site, he pointed out that when men come to this website for hope and assurance, and then notice that someone hasn't updated their information in over a year, that conjures up all kinds of negative images in their mind, as you can well imagine! So, my pledge from this point on is to "Update" at least once every six months, or sooner if something changes.
I am still on a regimen of PSA diagnostics every 90 days, and so far they've all been less than 0.02ng/ml, also referred to as undetectable, or for all practical purposes, simply zero. That's a good thing!
On continence issues, I still get a drip or two if I cough or sneeze suddenly and violently, but other than that I've had no problems. Although, I have awaken in the middle of the night to a wet spot on my sheet, but thankfully I had installed a mattress protector a month after my surgery. I've learned that this phenomenon occurs usually when I'm having a dream about having to pee real bad, and am frantically searching for a bathroom. Another contributor to this is consuming too many adult beverages prior to going to bed. (Duhhhh!) So I just apply a little common sense, and no more accidents.
Erectile function is completely another story. Since my wife died in 1998, I only dated one woman and that only lasted about 6 months. So I've basically been single for that past 8 years. Spontaneous erections are a thing of the past, but if I really work at it, using Viagra, my Osbon vacuum pump, and a lot of visualization techniques, I'm usually successful in achieving an orgasm. You can read more about this device here and you may also want to talk to your doctor about it prior to purchasing. I'm not advocating this particular brand, it just happens to be the one I own. There are numerous types and brands on the market, so do some research before you make up your mind, and with something this important... you usually get what you pay for.
I've learned through a lot of research and talking with my doctor, that keeping blood flowing to the penis is very, very important following a radical prostatectomy. Those nocturnal erections you used to get when you had a prostate gland are natures way of assuring that the penis is regularly saturated with blood in order to keep it healthy and functioning properly. With the absence of a prostate gland, you need to get that blood into the penis manually, and that's exactly what the vacuum pump accomplishes. I was amazed at how large and rock hard I was able to get using this pump, although unfortunately, it doesn't stay that way for very long. But at least I'm getting blood where it's needed, and hopefully over time it will re-learn to do this on it's own.
Finding another girlfriend is going to be tough because I'm not fully functional, and what woman would want to put up with that when she could easily find some other guy who is 100% functional. At least that's the dilemma I've painted in my own mind. I've had numerous lady friends of mine tell me that women don't care about a small thing like that, to which I respond - "that small thing is the problem!" But seriously, I believe that if I meet the right woman, I'll know it's right and she'll know it's right, but the odds of meeting that right woman are going to be a lot tougher now.
Going through this entire ordeal all by myself over that past 2½ years has been rough, but I've also learned a lot about myself in the process, and being patient is one of the traits I've mastered very well. Stay strong - stay healthy - you are not alone.
Greetings my friends.
Just checking in to let you all know that everything is pretty much status quo since my last update. It's been a little over 3 years since my surgery and my PSA levels are still below that magic number of 0.02ng/mL. Still getting checked every 90 days.
Haven't been feeling too good (about 70% of my norm) over that past year or so, and not sure if it's related to the surgery, anaesthesia, removal of lymph nodes, or simply because I'm just getting older. I often wonder if it's because my testicles are still producing sperm - but have no way of release, or escape. My urologist couldn't give me a definitive answer either, other than to say that the body simply absorbs them, to which my next question to him was.... "Then what side effects or other conditions or complications does that cause?" He said, "We simply don't know at this point." If any of you have been feeling tired, drained, or worn out, please let me know.
Continence is still 100%, but ED is something I'm still waiting for some much needed improvement. I've had a few nocturnal erections over the past several months, and when I woke-up I was jumping for joy! Hopefully, this is a sign of things still healing and re-growing.
I also happened upon this article that discusses recurrence of prostate cancer following surgery in obese men. You'll be very surprised to find out what is considered obese. You can find out your own BMI (Body Mass Index) here.
I need to lose about 30 pounds - but never thought of myself as obese! (I wear size 36 pants). Ok, back to the gym and dump the sweets.
Stay strong - stay in touch!
PJ (Pat)
Greetings all. Checking in once again to let you know that I'm still here, still doing great, and apologies for not updating sooner.
My PSA levels are still below 0.02ng/mL, and am now getting a PSA diagnostic every 6 months instead of every 90 days. Starting a new life. In order to get into optimum physical and mental shape, and maintain overall health, I enrolled in private Taekwondo training back in January of this year. I train 5 days per week for 1 to 2 hours per day, under the expert guidance of Grand Master Sang Sup Kil, and the results are nothing short of amazing. I've dropped almost 30 pounds (30 more to go), and just received my "Senior Brown Belt" this past Friday (June 27th). The training is very intense and grueling, but the benefits are priceless. Grand Master Kil assures me that my erectile problems will soon become a thing of the past within a year of his intense style of training. I hope to earn my black belt by years end.
Until next posting...stay positive, stay healthy, and... keep it up!
PJ (Pat)
Greetings All!
No medical changes to report, which is a good thing! My bi-annual PSA diagnostics are still at <0.02 ng/ml, which as most of you know, is considered clinically undetectable, also known as "0" (zero). Thank God.
I'm just about to hit the "5 years since my surgery" mark on May 27th this year - and after considering all of the material I've read and studied over the past 5 years, I am still an extremely huge proponent of RLRP. In my opinion, why would you want to play "Bio-Russian Roulette" with your life? Get that alien out of there and destroy it completely!!
I also had my first colonoscopy last year, and it was definitely not as bad or degrading as I had envisioned, even the "prep" wasn't as bad as they said it would be. Here's an important thing to remember my friends: It's very easy to lose sight of this other potentially looming killer within your bowels while you're in the process of fighting PC. So don't forget to get your colonoscopy -- just do it!
I'm still in active Taekwondo (see previous post) training 5 days per week - 2 hours per day, and the difference in the way I feel physically is nothing short of amazing. Oh yeah, I still ache most of the time, but I'm also going to be 58 this year, and the soreness will most likely always be with me - a very small price to pay for staying alive. I also earned my 1st degree "Black Belt" on March 13, 2009, and am working toward my 2nd degree which I should receive sometime in the fall of this year.
Until next time.... try to stay positive, stay healthy, never submit to defeat, and most importantly - keep it up!
PJ (Pat)
P.S. Thanks again Terry for your great website!
Hello again,
Well, it's been almost 6 years since my RLRP surgery, and so far, so good with nothing new to report. All PSA tests are still resulting in good news.
Received my 2nd Dan Black Belt in Taekwondo in September of 2009, and am still attending private training 5 days a week. It's grueling, and tough, but the benefits are well worth every drop of sweat, (and a little blood every now and then).
I'm still single and living alone. Not much desire at this point in time to even try and get into a new relationship with anyone. Just seems like I'd be setting myself up for major disappointment and depression. I'm perfectly content with my current situation.
Once again.... until next time.... try and stay positive, eat healthy, exercise, stay healthy, and never submit to defeat!
PJ (Pat)
Not much new to report since last year, pretty much a carbon copy of my previous notes from 2010.
Although I do thank God every day for everyone He's sent my way as an inspiration to keep on living and enjoying life, regardless of any obstacles that have been placed before me. Until next time....
PJ (Pat)
Greetings my friends. Sorry I haven't updated my story in almost 2 years, but I received an email back in 2012 that indicated that YANA is no longer accepting any updates. Was that a hoax? [No it wasn't a hoax. I was finding it very difficult to deal with the volume of stories and updates so I felt that I had to shut the site down. Fortunately a Band of Brothers came to my rescue and we could carry on.] Anyway, everything is well and status quo, not much has changed since my last update in April of 2011. My latest annual PSA diagnostic is still reading at <0.02 ng/ml, which as most of you know, is considered clinically undetectable (thanks be to God). I received my 3rd Dan (degree) Black Belt in September of 2011, and am still attending private Taekwondo training 5 days a week @2 hours per day. Until next update, take care and stay healthy! -Pat
Greetings,
Not much has changed since my previous posting. PSA diagnostics is still reading <0.02 ng/ml. Nothing new to add. Still breathing. Hang in there guys!
-PJ
Greetings,
Well, as of this past May 27th, it's been 11 years since my RLP surgery. Once again, not much has changed since my previous posting back in April of 2014. As of January 2015, my PSA diagnostic results are still at <0.02 ng/ml. Thank God. And I'm obviously still breathing. Hang in there guys!
-PJ
Apologies for not updating sooner but I had some other family issues to deal with over the past year. As of my last PSA diagnostic in November of 2016 everything is still good - undetectable. YES!! Not much else new to report, just wanted to let you all know that I'm still breathing, and you're not alone.
So sorry I have not updated my YANA story in a more timely manner, but I have been out of commission since October 13, 2017 when I experienced a life threatening angioedema episode (yes, that was Friday the 13th). The incompetent staff at the hospital I was rushed to managed to nearly kill me twice due to the tracheotomy and subsequent 2 week visit. I lost almost 25 pounds during those 2 weeks, and then spent the next 6 months in rehab (at my sister's house), and then endured 4 more trachea surgeries to try and correct the tracheal stenosis. Well, I'm still alive, finally moved back home last Sunday, and it will be 14 years on the 27th of this month that I had my prostate removed. I still get a PSA diagnostic every year, the results of which have been 'undetectable'. Yea!! Hang in there guys, prostate cancer isn't the worst thing that can happen.
Wow, time sure flies. Hard to believe it's been almost 19 years since my RLP surgery, (27 May 2004) and incredibly thankful with each passing day that I'm still on this side of the grass. Stay positive, be strong, and never, never, ever give up. You are not alone!
All is well here and not much new to report. It will be 20 years being 'cancer free' this May 27th, and am thankful and happy to say that my PSA remains undetectable, I'm still feeling good, and also looking forward to hopefully be updating this journal for the next two decades. There are plenty of other minor health-related issues to deal with at this stage of my life to keep me occupied, along with spending quality time with family & friends and enjoying life in general. Until next time, stay positive!
P's e-mail address is: pjrpole0460 AT msn.com (replace "AT" with "@")
