In 2012 I began to have to get up frequently in the night to urinate. After limiting coffee, alcohol, all liquids in the evening etc, it became obvious that I had an issue with enlarged prostate. So I journeyed down the street to my GP to get a scrip for Flomax and figured that would solve my problem. To my chagrin, out came the rubber glove, and a PSA test. Up til then I don't think I had ever had a PSA test as they weren't Gov't provided any more unless the Dr. had a reason....well, I guess there was a reason. The DRE revealed only an enlarged prostate, but no irregularities. The PSA test came back at 4.58, and my Dr. said I should see the urologist. A couple weeks later I'm at the Specialist, where once again the rubber glove came out. At that time, I was advised to have a biopsy. I will say that now i started to wonder about PC, and as I researched biopsy procedures, I also started to wonder if I should just put my head in the sand and ignore the whole thing. I admit the biopsy had me scared to death. 2 weeks later I'm at the hospital, convinced that I will not survive the biopsy. on the scale of unpleasant procedures, I was convinced I was looking at a 10/10. To my surprise it was about a 7/10. Not fun, but it was quick and not bad. Couple more weeks, I'm back at the Urologist where I get the news.....PC, 2 cores Gleason 6. While my head was spinning the Dr. said "So this is all good, it's as mild as possible. you have a few options, but of course the route I recommend is AS., with regular PSA tests, visits to me every 3 months etc and we will carry on going forward."

Wait, what? You don't want to operate?, my life isn't over? I'm not on my death bead?"

"Of course not" he said. There's an 85% chance that people with your numbers, your biopsy, etc will simply spend the rest of their life under AS and see me every 3 months, then every 6 months, regular biopsies, etc; there's a 15% chance that treatment will be required down the road."

I said "I hear about these people who die from PC, who are they?"

He said "For the most part, those are people who aren't diagnosed until there are significant symptoms, very high GS, PSA etc, bad biopsies etc. You are not in that camp, and if and when your situation changes, then we will treat it."

So unlike most people giving their stories, the PC diagnosis did not panic me, or particularly upset me. When I got home and had a cocktail with my wife, I felt strangely relieved and calm. I said to her "You know, many of the men I know my age are at some sort of risk of dying of PC... it could happen to Joe my neighbour, but it can't happen to me, because I'm now 'in the system' and under protection. The analogy in my head that made sense was that I was like a fish in the ocean. That fish is living a great life, but is always at risk of being eaten by a shark or other predator. If he is caught and sent to live in an aquarium, he might be losing some quality of life, but he is being looked after and will never die from a predator. I don't know if it's a good analogy, but it made sense to me, and that's how I looked at it

Every 3 months I visited the Dr. and every 3 months had a PSA and DRE. DRE was fine, PSA occasionally crept up a bit, dose of CIPRO and it was back down a bit. Never a number that was cause for alarm. After a few years, another biopsy was in the cards. I recalled that my first on was A LOT easier to take than I anticipated, so I went into this one pretty cocky, with the expectation that it was a piece of cake....like a 4/10. YIKES. The truth is that things haven't changed, . it's still a 7/10 on the unpleasant scale. But, bottom line, same results, GS 6, 2 cores etc. So we carry on, and then switch to every 6 months....I continue to pass the DRE test with flying colours, and do oK on the PSA. January 2020 comes, and it's now MRI time and then Biopsy time. I've started Avodart on the doctor's recommendation so my PSA is 4.1 as of now, but I've show the doubled number as 8.2. MRI shows everything in the same left quadrant fully within the prostate. Remembered to go into the biopsy with the expectation that it was going to be awful, and it worked as it wasn't as bad as expected. but I'm hit with the whammy that I'm now GS 7 ( 3 + 4) 4/12 core sites involved; % involvement 9% & the Dr. says OK now we are going to actively treat.

We discuss options, which really are limited to Radiation and Surgery. I'm not interested in some of the 'new age' unproven options. I've a good 8 year run with AS, and now I want a solid medical solution.

So, surgery it is. I've always been most interested in the Da Vinci option, and have discussed this over the years with my Dr., partly because we would discuss ISRG stock etc. He always said that skill and experience of the surgeon is the overriding factor. He does Open Surgery, has done over 975 procedures, trained at the Mayo clinic. I thought that was pretty good and I trust him implicitly. 975 sounded good, but was that a lot? and is he a good surgeon?

Now I introduce to the story my young nephew, who happens to be a Urologist, graduated within the last 3 or 4 years. He trained with, and knows, the top Da Vinci surgeon in Southern Ontario, in a city outside of Toronto. He said 'I could set you up with him if you like. He is one of the best in North America, does 200 a year"

I said, 'Well, I like my guy, and I think he is pretty good, and he has done just under a 1,000 procedures. I know I'm looking at an extra day in hospital on average, but otherwise outcomes are the same etc., Let me know if you know anything about my Dr. " He talks to some of his classmates who have assisted with my Dr., and they tell him that my Dr. does the best Open Prostate surgery they have ever seen, and they have assisted and trained with various surgeons. My nephew confirmed after looking at my pathology report that I am in as good a position as possible, that surgery is the right solution, and that I should expect a full cure.

So I'm in a good position, I'm going to stick with my guy that I've been with for the last 8 years, and am scheduled for surgery end of March.

I am trying to maintain a positive attitude and I swing between being scared to death on one hand and looking forward to getting going on the other hand.

I'd be pleased to hear from anyone who has questions, comments, advice etc.

Have a great day everyone, and I hope to update by April 1 with good news.

Just checking in 4 days Post Surgery. I was scheduled for 3/10, however a high risk bladder cancer surgery bumped me to the 24th, then COVID-19 bumped me to unknown. Then the surgeon called and said they had go ahead to do surgery on April 6. Instructed to report to hospital for surgery right after lunch. Of course the hospital is shut down to absolutely everyone who doesn't need to be there, so my wife didn't get further than dropping me off at the door. I'm the last person in the world who has the nerves to spend a couple hours alone waiting for surgery, but what could I do. When we get close to the time, the anesthesiologist comes to meet me and explains that, due to COVID-19, they will not be using the regular method, but rather would give me freezing in my back, and something to relax me! Wait, what? You mean I will be kind of awake and be able to hear whats going on, but will be frozen. NO WAY. He explained, No No, , you will be totally relaxed, likely fall asleep, and wont remember anything. My Skepticism and nerves were thru the roof at this point. THEN, I had to walk to the OR where 5 or 6 people were gathered around. ( I was really counting on being given drugs and being fairly loopy before I was even wheeled into the OR). I sat on the operating table and they gave me the needle and my body started to freeze. My surgeon came in, brief chit chat, then lets get at it. I looked at this nurse standing over me and said "Who the heck are you?" She said "I'm Sally in Recovery, we just phoned your wife, and everything went great." Huh? I'm done? Woo Hoo. Brief convo with the surgeon, everything looked fantastic, and off I went to my room. Since there were no elective surgeries being done, the post surgery wing was pretty empty, everyone on the floor had a private room. Liquid diet til Wednesday morning, with the exception of sandwiches one of the nurses snuck me twice.

Post surgery I had no pain whatsoever. Discomfort, feeling like a horse kicked me in the Abs, but no pain. The only pain relief the hospital gave me was regular Tylenol every 6 hours. They kept asking me if I wanted more, but I never needed it. In addition to that, they gave me stool softeners and bladder spasm medication. I never had any bladder spasm issues.

Everybody says that the catheter is the worst part, and I can see that, but I will say that it is not too bad. During the 2 nights in the hospital, it quite bothered me because I always felt like I had a full bladder and had to pee. I did not see how I could last 2 weeks like that. However, the nurse explained that a lot of that was due to the liquid IV I was also taking. My body was bringing in a lot of liquids. Now that I'm off the IV, I no longer have that full bladder feeling. My surgeon is adamant that Catheter stays for full 2 weeks after surgery for healing purpose, so I guess that's OK., , I mean it's not as if I have anyplace I can go.

The nurses who work in Urology post surgery all told me that the quality of surgeon is of utmost importance in this type of surgery, and reiterated what I already knew, that my surgeon was one of the best in the business.

Thank goodness for our healthcare system, I think it's the best in the world.

Best of luck to everyone heading into surgery. I will update after pathology, catheter removal, etc.

22 days post surgery, 8 days post catheter removal, 1 day post pathology report.

Reading my last update written 4 days post surgery I would like to correct one small item. I had said that the catheter was not too bad. I would like to clarify that it was likely the worst 2 weeks of my life! Apparently very large catheters are used ( I don't know if its just my surgeon or if its common practice) in order to ensure blood clots etc can all pass freely. The average adult size catheter is 12 or 14, I had a size 24. It seriously looked like a garter snake (my penis) was swallowing a garden hose. I was at home most of the 2 weeks, so I found it easiest to use the night bag all the time rather than the small leg strapped day bag. I simply carried the night bag around in a plastic grocery bag. I did notice that some types of Polysporin contained a numbing agent (lidocaine) and some did not....I would recommend the one with the numbing agent.

With respect to pain, I had none (only discomfort from the catheter) so I took no pain pills other than the occasional Tylenol. I had a scrip for percocet but I only took 2, both times hoping they would help me sleep better.

Stool softeners were provided, and even with those and a very high fibre diet, BM were difficult. Any strain whatsoever resulted in blood from the catheter. The whole 2 weeks was just a miserable experience. Catheter removal day was a day to celebrate.

In my area we have nursing clinics that are devoted to things like catheter removal, wound management, etc. They basically provide nursing care for things that don't require a Doctor. The Doctor refers you to the clinic (they aren't like walk in clinics, more like upscale private nursing care). Anyway, they did the staple removal after one week and the catheter removal after 2 weeks. I don't know how long this system has been in effect, but it's very impressive, and seems very efficient, saving me trips to the hospital or the Surgeon's office. I had great care there. No complaints about where my tax dollars are going !

I was pretty apprehensive about catheter removal for 2 reasons: 1 - the whole incontinence issue , and 2 - the pain/sensation etc of the removal. wrt #2, it was not painful at all, but it wasn't pleasant. It basically felt like a long hose was being pulled throughout your body and out your penis ! As far as incontinence, I was pleased that it came out and I pulled up my adult diaper and left. . . no gushing or out of control flow etc which is what i expected/feared. When I urinated an hour or 2 later, I had good stop/start control over the flow so I was happy about that. I think Kegels over the last few months helped in that respect. I wear pad or adult diaper, and go through about 2 a day, giving a little squirt when I cough, or jump up out of a chair etc. I feel like I'm in a pretty good position given that it's only 8 days post catheter.

The surprising thing I have found is that I'm urinating a lot at night...up every 90 minutes or so. Researching on the internet leads me to believe that it's due to bladder swelling/surgery effects, it is common, and that it will get better every day. My discussion with my surgeon confirmed that.

Speaking of that, due to Covid 19, we carried out our pathology/post op discussion via telephone yesterday. Gleason 7 confirmed, margins clear, no evidence of any spread whatsoever...both sides nerves spared. He said that it was as textbook as could be expected and that in his opinion I will be considered fully cured and my 3 month PSA will be undetectable. He sent a scrip for Cialis 5 mg to the pharmacy and I picked that up today.

The single lesson I've learned and can pass on is that the skill and experience of the surgeon is paramount. Many types of surgeries are the same: one knee replacement is not much different than the next, and if the surgeon knows how to do one, he knows how to do 1000. But I think a prostatectomy is different in that every single one is a little unique. Some parts are twisted here, and some parts are attached there. A surgeon who has done 1,000 successful procedures is different than one who has done 50. In addition, the consequences of any small error or complication can be devastating as far as lifestyle. Find the best and most experienced surgeon you can!

2.5 months post surgery and I just had my first PSA & discussion with surgeon. The good news is that it's less than 0.01 and considered to be -0-. I will admit that I was getting apprehensive about this, more so than any of my pre-surgery PSAs over the last 8 years, or biopsy results. I was extremely relieved upon hearing the news. I had the option of getting my results online from the LAB beforehand but did not want to do that. Upcoming tests I will likely do so prior to meeting with my surgeon. So now it's PSA every 6 months for 10 years, and annually thereafter.

I'm very happy to report that incontinence is not an issue, and really hasn't been from the start. for 2 or 3 weeks I wore a pad all the time, and although i had full control of stopping and starting stream, I would have occasional accidents or squirts upon coughing, sneezing, lifting. These could be controlled if and when I felt the cough coming on, but sometimes I was too late. After about 3 weeks i stopped wearing the pad at night b/c I prefer sleeping au naturel, and only wear them through the day here and there, and simply because I have invested $16 in 2 packs! I may as well get my money's worth. Of note is that I now pee like a racehorse. Looking forward to winter so I can write my name in the snow, which hasn't been done in many years. The only urinary issue/downside is that I seem to still be up more than once or twice in the night. I was expecting to longer be up peeing but seem to be getting up 3 or 4 times a night still. I'm conscious of limiting caffeine/alcohol but suspect I'm going to have to be more strict.

With respect to ED, I have a scrip for Cialis 5mg which I have been taking, but not every day. It's been hit & miss as I've only been taking them when I think I might have the urge for sexual activity, either with my spouse or solo !!! My surgeon advised that I should take them daily no matter what to encourage action down there, so I will begin to do so. At this time I have grade 2 ( I think) erections which are defined as semi hard but insufficient for penetration. I do feel that I'm close. At 2.5 months post surgery I'm happy with that progress. I will say that non erect orgasms are something I did not think was possible prior to reading about it here, but they are top notch. Longer lasting, full body, different sensation, overall preferable orgasms.

Parting thoughts: I'm glad I did Active Surveillance for 8 years and also that I jumped on surgery as soon as I had moved to GS 7 (3+4). In my opinion, (& I'm just a guy) Surgery is the first choice for treatment once AS is no longer an option. I will reiterate til the day I die (of old age?) that the quality and experience of the surgeon is the most important consideration. . . not robotic versus open, not convenience of hospital, etc. Don't go with a surgeon because he's nice, because he has a good bedside manner, because he's available. . Go with EXPERIENCE AND QUALITY.

Best of luck to everyone. If anyone wants to email me with questions or comments, I'm always happy to correspond.

9 month post surgery PSA = undetectable. I had my first post surgery PSA at 3 months, and will be every 6 months going forward. I will say that the apprehension going into PSA results is alot higher than it was for the last 8 years , or going into surgery. But, so far so good.

On the continence front, the week before I went into surgery I bought a couple packs of pads, and a case of adult diapers.. . .. used those for about 2 weeks post catheter removal, and haven't touched them since. I'm 100% on that front. WRT ED, it's a work in progress. 5 mg Cialis doesn't seem to do much. I have a scrip for Viagara, but don't use it much as the side effects are irritating. The most I've taken is a quarter of 100 mg. currently I'm at about 60% of pre surgery results, so full penetration is yet to come. Post-surgery orgasms in a semi hard state are outstanding; I liken them to fullbody orgasms that last longer and are more intense.!!!

I will repeat my previous opinion: If you are going the surgery route ( & I don't know why anyone would choose any other option unless they had no choice) then get the best surgeon possible. i know alot of folks are adamant about robotic, but I don't think the choice between robotic and open is clearcut. Robotic has few cuts so day less in hospital, but open gives an experienced surgeon a hands-on feel for what's happening....there's pros and cons to both. Remember, it's the surgeon doing the surgery, not the robot. Get the best possible surgeon....not just one you like, or one who has a good bedside manner, or one who seems llike a nice guy......choose one who is experienced, and has an outstanding track record.

Here's another opinion that I've been told, and makes some sense to me. Alot of people go to teaching hospitals because that's where the expertise is. When I was going into surgery, I had asked if any residents or onlookers or 'trainees' would be coming at me with a knife. They said "absolutely not, your surgeon is the one who does the surgery. The only place that interns/residents do hands on training is in teaching hospitals, and we are not a teaching hospital". As I thought of it, that made sense to me.....so in my uneducated opinion, I'd prefer to stay away from a Teaching Hospital unless you want teaching to be done, using your body !!!!!!!! I'm open to hearing otherwise., but what I was told makes sense.

Good luck to everyone, stay safe, and feel free to email me any time with any questions for comments.

Cheers

Apologizing for being a little late with the update. Successful surgery was April 2020 followed by 0 PSA readings. This update regards April 2021 PSA which once again was 0 . Absolutely 100% great in the incontinence department, and have been since surgery. ED continues to be a work in progress. I have a scrip for 5 mg daily Cialis which I try to take daily, however its not highly effective. Viagara is more effective. I have 100mg pills which I split into quarters or halves. The most I've used is half as I find Viagara side effects to be quite bothersome. I anticipate that things will continue to improve on this front.

Currently I'm on 6 month PSA test schedule and I'm scheduled for the next test in Dec , at which time I will try to be a little more timely with the updates.

I always welcome questions comments or anything else via email .....feel free to email me

Cheers & best of luck to everyone.

It appears it's been more than a while since I updated my story. Good intentions and all that, but life is busy being retired during a pandemic. Oh well, if they really needed an update, they'd email me wouldn't they? Oh what's that in my junk mail folder ... oh oh.

2.5 years post-op . PSA is checked every 6 months and continues to be undetectable. My urologist plans to continue for a total of 5 years, then PSA testing once per year carried out by my family doctor. on the incontinence front, happily there never was an issue from the time the catheter was removed. The only noticeable difference is that when you have to go, you have to go. I did buy adult diapers & pads prior to surgery, but never used them....Saving them for old age I guess.

With respect to ED, I have a scrip for both 5 mg of Cialis & also Viagara. Although I had full nerve sparing surgery, it has been a challenge that continues to improve but I'm not at 100%. Having said that, my wife & I both agree that our sex life is as good or better than it has ever been. I guess there's various reasons for that, and if anyone wishes to discuss I'm quite willing to do so via email.

I don't think the physical changes after surgery are discussed enough but I will declare that the observations of post op 'shortening' are not a myth. It's an old joke about going in for penis Shortening surgery, but I never thought I would actually end up getting it !!!!! Being happily married it's not the end of the world, but I'm glad I'm not in the dating pool having to explain " No really, it used to be bigger.....it's the surgery I'm telling you "

My New Years resolution: I'll update when anything develops or if I have anything to say. I promise

Best of luck to everyone here. For newly diagnosed members, getting diagnosed at GS 6 or so could be the best thing that ever happened to you. You're 'in the system' & will not have to worry about being hit out of the blue with a life threatening diagnosis. For those passing through out of curiosity, get your PSA checked at least once regardless of age, regardless of symptoms., For those with more serious diagnosis, there are tons of treatments, and many more always coming online.

Anyone feel free to email me anytime about anything, I'm much better at responding to emails than I am at updating my story.

Cheers

Apologies for the extremely overdue update. It's funny that, with treatment in the rear-view mirror, how easy it is to put off updates and ignore reminders. "Ya ya, I'll get to it as soon as possible". In other words, PC doesn't enter my mind much these days, thankfully.

Since surgery 4 years ago, PSA has continued to be undetectable. I'm on a 6 month PSA test cycle. Once I hit 5 years post-op, I'll be referred back to my family Dr. where I will be on a yearly PSA schedule.

WRT the big 2: Incontinence has never been an issue. From the day of catheter removal, the worst I've experienced has been the occasional drop when straining etc. I do take extra care after urinating to ensure I've done, and usually stuff a piece of tissue in my knickers just to be on the safe side.

ED: I have a scrip for both daily Cialis (5 mg) & Viagra (100 mg, but I always split the pills in halves or quarters). I mix & match looking for the best combo, but of course I never go near the max dose. I was a bit surprised that I have never got back to 100% considering I had full nerve sparing. Occassioinally full penetration is achievable, but not always and not guaranteed. Having said that, & without going into alot of detail here (I'd be happy to discuss via email if anyone is interested) there isn't a week that goes by that my wife and I both agree that our sex life has never been better and lament missing out on the fantastic initimate times. We likely average 10-12 great sessions a week (mornings & nighttimes). As far as the actual ED, it did continue to improve even 4 years after surgery.

For newcomers considering surgery, my recommendation continues to be 'Don't get hung up on RALP versus Open - - there are Pros & Cons to both. the only consideration you should have is skill, reputation, and experience of the Surgeon'

Everyone feel free to email me anytime.....I'm better at answering emails than I am at updating my story here (but I resolve to do better !)

Cheers everyone....I hope the weather is better wherever you are.

Sandy's e-mail address is: sandyceed AT outlook.com (replace "AT" with "@")