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Michael K and J live in New Hampshire, USA. He was 53 when he was diagnosed in November, 2014. His initial PSA was 6.40 ng/ml, his Gleason Score was 7a, and he was staged T1c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

My story begins in about Nov 2013 when my very good family doctor noticed that while my PSA was <4.0. it had risen by almost 1 point over the previous year and wanted me to see a specialist. Unfortunately the Urologist that he originally wanted me to see was not available and the referal went to a Dr. C. At this stage things went downhill. After waiting for 1 month for my appointment with DR. C. I don't actually get to see him but instead see his P.A. who prceeds to give me a DRE ( henceforth to be called the "finger-puppet" treatment), and tells me everything is fine and there is nothing to worry about. As I was leaving the Urologists office I expressed my displeasure and told them that I believe my doctor wanted me to see a specialists and not a "Super Nurse"... they then re-scheduled me (one more month wait) to see the actual specialist Dr. C. who I was originally supposed to see.

After one month I see Dr C. and he repeats the finger puppet test. He Tells me that PSA limit doesn't really mean anything. I mention that it was PSA velocity that caused my family doctor to refer me. He tells me PSA velocity doesn't mean anything either. He then says that the DRE ( finger-puppet) test was normal that doing a biopsy has serious life threatening risks, "did I even really want to know if I had Cancer", and what did I want to do.

I went back to my family doctor and told him that I didn't think that specialist scenario had panned out the way I believe that he intended.... if all he had wanted was the finger-puppet test he could have done that himself originally. He agreed and said that he would make some calls... He set me up to see the Urologist that he had originally wanted me to see...

I saw the second Urologist (I'll call him U2 from now on), and I immediately hit it off with him. He's a crusty, older no-nonsense type. He too indicates that it is not totally clearcut what to do from my PSA scores but does think they have significance. He asks about my coffee consumption (says that can affect PSA levels... I drink a lot of coffee), and whether I had sex right before my last PSA test... I don't remember... nobody ever asked me to be a good boy before the PSA blood test. He suggests that I cut down on my coffee significantly and to be a good boy (no-sex) before the next PSA test and we'll retest in 4 months.

Fast forward 4 months.

PSA test now comes back as 6.4... and free PSA is < 10%. U2 says we do the biopsy now. The biopsy wasn't that bad.

Unfortunately the results were. 11/12 cores come back cancerous, five are Gleason 7 and 6 are Gleason 6. Perineural invasion is also evident in one sample. This was not what I was expecting... having done a bunch of reading since this whole thing started (it's been almost a year now) I was convinced that since everything that I had heard said Prostate Cancer grows normally very slowly I had mentally figured if I tested positive I would be in the early stages and we would proceed with the "active-surveillance" plan.

When U2 told me he said we needed to do something and ruled out two: "active surveillance" and "hormone therapy". He said that the two choices were really radiation or surgery. He recommended surgery given my age and general good health but said that he would be happy to refer me to an oncologist specializing in radiation treatment. I had done some reading prior to this and had decided that I did not care for the radiation (actually none of the treatments are especially appealing) so Surgery it would be.

Here was where U2 threw me for a loop. he recommended that we use Dr C. to do the surgery laproscopically using the DaVinci robot. I expressed my misgivings about Dr. C but we tentatively scheduled an operating date for the end of Dec 2014 with Dr C. doing the surgery. In Mid Dec I had an appointment with Dr C. to discuss the procedure.

I was not comfortable with the plan and after discussing this with a friend who had the open prostatectomy I scheduled an appointment to discuss my diagnosis and possible surgery with the quite well-known and respected doctor, Dr L., that he had used, who only did the open surgery radical prostatectomy.. Thus I looked into both forms of the surgery.

In the end I decided to go with the open radical Prostatectomy to be performed by Dr L. at a large teaching hospital vs the robitc approach at a small local hospital. There seemed to me to be some slight advantages of the open approach ( surgical margins, ED and continancy rates) vs the laproscopic approach and ultimately I felt much more comfortable with the very experienced surgeon, Dr L. who would be doing the open surgery.

I kept my appointment with Dr C. but instead of discussing the upcoming surgery with him. I informed him that he would not be doing the surgery as I had no confidence in him. It was funny but he spent far more time with me wanting to discuss why he was fired than he ever did attempting to diagnose what was going on with me. He felt that I had unfairly ( with 20-20 hindsight) condemned him for not doing the biopsy on me almost a year ago. He said that it was not a clearcut decision... I agreed and said that it had been a judgement call... he agreed as well. I went on to say that, regardless of the surgical method chosen, my reading indicated that the relative success of the surgery was due almost entirely to the surgeon's experience.... again Dr C. agreed. I told him that I believe that experience is composed of two parts: first is the actual mechanics of the procedure, and the second is the surgeon's judgement that he will use during surgery... and that was why he was not chosen.

I am now about two weeks away from my surgery date but am comfortable with my choice of surgeon and approach. I realize that even with with all of this "comfort" we are still rolling the dice and I just might be one of the small percent of patients who have a continancy problem afterwards or severe ED...

Face it, this is not the choice that any of us would make ( having surgery or radiation) if we bleieved there was a better way... you have to pick your "horse", place your bet and hope your horse delivers the best possible result for the race.


January 2015

Post Surgery,

I know that the site says that immediate post-surgery stories may not be the most useful/helpful to others but I think this may and it also serves as a catharsis for myself.

I had my radical retropubic prostatectomy on Jan 13th and so I am posting this five days post surgery. The surgery itself took about 5 hours (from lights-out till lights flickering back on in the recovery room.)

We had a bit of a run on hospital rooms and so I spent about 4 hours after waking in the recovery room waiting for an available room. Lahey only had private rooms and I think that would have been a wise choice anyway as being hospitalized for this surgery does tend to make you feel like an exhibitionist and being able to close the door and deal with catheter issues is nice.

If I had to rate the pain from 1-10 I would say that for the most part it was about a 3-4 and at that the pain was largely due to gas in my intestines. Doctor said that the sooner my intestines woke up and the gas passed the better I would feel. I therefore decided two things. One was to not use the IV based pain-button trigger pain medicine as I was told that would slow down the intestinal recovery (which was really causing 90% of the pain anyway) I just requested Tylenol, and the second thing was to walk as much as possible which helps get the intestine going again and has the side benefit of getting circulation going in the legs to avoid the deep leg thrombosis worries. Once you start walking they should also allow you to remove the inflatable leg boots so that is one less impediment to normality.

I had surgery early in the morning and the rest of that day was spent somewhat uncomfortably sucking on sponges on a stick to quench any thirst. You are hooked up to an IV anyway so you won't dehydrate but I would have killed to have something to drink, but nothing was allowed until some bowel sounds were heard. I took my first walk around the hospital corridors that night. The most pain that I found with this was getting out of bed and about the first 2-3 minutes and it still was not bad. After that I actually felt better walking around than I did in bed, this trend repeated the entire stay in the hospital.

On day two I was now given small amounts of water to drink but nothing to eat until I could pass some gas. ... imagine that being able to fart is a good thing. Finally getting the water was a blessing and was a short step to the "clears" diet on the same day....

Day three saw a couple of breakthroughs. As I was now taking in enough liquid by mouth they disconnected me from my IV which made walks much easier. I continued my incessant walking, much easier without that damn IV pole! I also got my first solid food and tolerating that well was what they wanted to see before allowing me to go home. Hence I got to go home late in the evening of day 3.

Two notes about your hospital stay... try to take a shower while there it will definitely make you feel better and will allow you a sort of run through of what it will be like later at home... you can actually ring for help or ask any questions as to how to manage anything associated with it. Also the catheter does not necessarily automatically drain at night even though it goes to a container which sits lower than you and is connected by a tube... it can sort of hydraulic-lock whereby the tube looks full of urine, yet yyour bladder feels like it is going to explode. I had this happen during the second night and after checking the tube I assumed it was me (my bladder always felt a little bit like I had to go to the bathroom because it never truly is empty). Playing with the hose a bit (raising and lowering various sections allowed it to drain and what a relief it was.

I have now completed 3 more days at home. I wear the leg bag during the day and switch to the annoying catheter pail at night. I'm not sure why, but getting in and out of my own bed has been less painfull/difficult than getting in and out of the hospital bed was. I am back and able to do work on the computer and feel pretty good, though I take periodic breaks to continue my walks.. I'm slowly working my way back to getting a nice steak into my diet as well!




February 2016

Hi folks,

I've been remiss in updating things so my apologies but life has been busy... in good ways. I Say in good ways because despite what some may consider non-positive side effects life is generally good.

I have now had two PSA blood tests and PSA is undetectable so it appears that in my case surgery has eliminated the big "C" for me.

And now for the less than positive. Regaining full continence has been a slow process, but it is proceeding and is not as bad as I would have thought or experienced initially. Initially it was a situation of multiple pads per day and forget any alcohol. If I drank any beer I seemed to lose feeling/control at all and would pee continuously. Also initially the feeling that I had to go was about every fifteen minutes. I had a friend who went through this and he was totally dry within about 4 weeks. Me, it's been a year and I am almost there. I am now almost totally dry (just don't make me sneeze, cough or strain during exertion... then you get a little leakage). At this rate I expect to be totally pad free within the next three months so that makes me happy. At the start I would have thought that if I was still having issues by now I would be pretty upset and depressed but the issue is so minor and has been for at least the last six months that I feel I can be patient.

As far as ED. Viagra didn't work for me and on top of that based on what the pills cost and how miserly my insurance company would ration them (4 per month) I would be broke and also damn near a monk. I am doing the tri-mix injections and cost-wise this is definitely the frugal path. The down-side is that I seem to be quite sensitive to it and have had to be very careful not to overdose (you try explaining to your 10-year old why daddy has to go to the ER at 11:00 at night) - something I have so far avoided but 2-3+ hours duration is not unusual. So there can/will be sex after surgery!

On the whole, when I was diagnosed with Prostate Cancer I looked for three things in treatment, listed in order of priority:

  1. Cancer-free (done once and for all)
  2. Continence (pee when and where I want to)
  3. Potency (sex possible)

I've got 2 out of the three and am almost there on #2 so I'm fine with my choices.

Michael's e-mail address is: mdkline@metrocast.net