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Ray V lives in Arizona, USA. He was 60 when he was diagnosed in February, 2012. His initial PSA was 6.30 ng/ml, his Gleason Score was 7b, and he was staged T1c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

I was 60 when diagnosed. I am very athletic and in excellent shape (bicycle), but my father had prostate cancer at 60 so I know my risks. My PSA had been hanging around 3 to 4 for about 2 years, then went to 4.1. My regular doctor said to have one more test 3 months later, at which point it was 6.3. So off to the urologist in January 2012. He recommended a biopsy, which showed 4/18 cores Gleason 3+4 and 4+3.

My urologist is a well-respected doctor in community practice. I thought about going to Mayo in Scottsdale, but I liked my urologist so I decided to stay with him. After a lot of research, it seemed like the best chance for a cure was an open prostatectomy. The final thing was when I asked him what treatment he would take if he had prostate cancer, and he said the open radical. So that is what I decided to do. He said that while the visibility was better during a robotic surgery, his sense of touch was better in the open surgery.

Had the surgery in Banner Baywood in Mesa, Arizona the end of March 2012-very good hospital. Lots of pain for several days, also puked all over the room since the morphine made me sick. After several days things got better and I went home after 4 days. Used percodan occasionally during the next several weeks for pain. The catheter and bag were by far the biggest irritant, had that out in 2 weeks. First PSA at 4 weeks "undetectable". Pathology showed a downgrade to Gleason 3+4 with a small focal EPE. All else clear. I requested a second opinion from the senior pathologists at the hospital (just to be sure), and they concurred with the original pathology.

Off work for 5 weeks, but I could have gone back after 4 if necessary. Started riding bicycle again 5 weeks post surgery, no pain or problems there.

As of 7/24/2012, awaiting results on my latest PSA.

Continence-been doing the Kegels since catheter out, but continence terrible (diapers) until about 2 weeks ago. Seems to be coming around, 2 pads a day.

ED-total at this time. Zippo. Been using the vacuum pump daily and daily 5 mg Cialis, but nothing. Will review with the doctor next week. The idea of sticking a needle into Willie is not appealing.

Quick advice-do not underestimate the side effects from this surgery. Be prepared to do whatever is necessary for as long as necessary to get better!!!!!

UPDATED

July 2012

Today 7/26/2012 I got my 4-month post-surgery PSA. It is "<.03", which is the lower limit of the machine and considered undetectable by my urologist. Continence slowly improving, nothing on the ED front yet. So good overall.

UPDATED

October 2012

Just had my 6-month PSA, came in at <.03 so all is well on that front.

Incontinence is still hanging on. I try to avoid pads because I don't like them, but I tend to get damp underwear instead.

ED is still total. Various Levitra and Cialis doses have no effect. I use the vacuum device for therapy, but it just gives a "ballpark frank" effect so it doesn't work for sex. The doc wants me to try the injections, but I just can't get to that point to try them.

So I am pleased so far with the cancer control, but the 2 big side effects are much more disturbing than I thought they would be.

UPDATED

November 2012

Last night for the first time post-surgery (7 months ago) I had some decent wood and was able to perform. The help was 20 mg Cialis, which worked for the first time. Maybe 50%, but good enough for penetration and finish. So at least things are starting to improve. I wil continue with the daily vacuum therapy and see how it goes.

UPDATED

January 2013

Got my 9-month post surgery PSA results today. Still <.03, so all is good on that front.

Incontinence is still a problem, lots of leakage and squirts. I wear a pad when I have to go somewhere important. Otherwise I carry spare underwear for when I make a mess. It has not really improved any for about 6 months.

ED is still total. It does not seem to have improved any. 20MG of Cialis just gives a little puffiness, not usable. I hate the pump, so I don't use it. I finally went in to the urologist in December to get Trimix. I had my appt with the PA, but the prescription for the Trimix was not ready so I got instructions on use but no trial injection. This was 5 weeks ago, and I still haven't got up the nerve to try the injection.

So overall I feel good. However, it is depressing that things just don't work anymore. I guess just a matter of the "new normal".

UPDATED

April 2013

Just got my 1-year PSA results. Still undetectable (<.03)!!! The uro and I are both happy, considering the Gleason 7 and EPE. I have returned to my full previous fitness level, bicycling 8-10 hours a week.

Urinary leakage still spotty (pun intended). It will seem ok for a few days, then I will start leaking badly after urinating. Also I occasionally wet at night. It has not really improved any for about 6 months.

ED is still severe. The pills don't really work, just give maybe a 20% erection which is not useful for anything. I have tried the Trimix injections with mixed results. The injection process is not really painful, but the resultant erection is somewhat painful and numb. The uro want me to use enough Trimix to get to about 100%, but when I do that I get painful 4-5 hour erections and I have come close to the ER several times.

So I am definitely happy with the cancer control and I am convinced I made the right choice. However, the ED problems in particular have been a very negative quality of life issue.

UPDATED

October 2013

I just got my 18-month PSA, and it is still undetectable. So I am happy with that, considering the Gleason 7 that got through the capsule.

Continence is "ok", that is about it. I still leak after urination, but I am used to it. No way am I getting any of the implants for incontinence, I get along fine on my own.

Erectile action is another story. Still completely dead on its own, pills don't do much of anything.

Trimix works, but the resulting erection is painful and stays that way for hours. The actual injecting is easy, it is just the results that are painful.

So overall I feel good, but things are just a lot different now.

UPDATED

May 2014

The urologist switched me to PSA once a year, so no test until about September.

The one good thing to report is that I had my first post-surgery successful encounter (about 90%) using Cialis 20mg after 2 years, 1 month. Previously the Cialis would only give some puffiness that was no use for intercourse. However, still nothing happening naturally (without pills).

Prior to this time, only injections were successful with the resulting very painful erections.

UPDATED

October 2014

I got my 2.5 year post RP PSA today and it is still undetectable.

ED is still pretty much total, no natural recovery at all. Trimix works pretty well, I just don't like it that much but that is all I have that works. Orgasms are no longer painful like they were after the surgery, but they are not nearly as good as before the surgery.

I still leak a lot of urine, especially during sex. It looks like that is the way it is going to be, so life goes on.

UPDATED

June 2015

I am now at over 3 years post RP. I feel ok and I am in good physical condition. I exercise heavily (bicycle) and keep my weight down.

PSA still undetectable, so that is good.

Continence is ok, except for during orgasm attempt. I leak occasionally during exercise. Continence seems to have improved in the past year.

Sex is non-existent. I have not attempted intercourse in about six months due to the following problems:

  • Total ED. I can get an erection with Trimix injection, but the resulting erection is sore and painful.
  • Very poor orgasms. They are weak and I have spasms that are uncomfortable, bordering on painful.
  • Massive ejection of urine during the orgasm. I expel a large quantity, which is a total turnoff for both me and my wife.

UPDATED

December 2015

I just had my almost 4-year PSA, and still undetectable. Retirement is fine, better than working for corporate America. I am in very good condition overall for my age 64. Urinary function is passable, with some leaking during exercise and other times.

The biggest negative is the apparent end of my sex life. I have never recovered satisfactory sexual function since the surgery. With enough drugs and injections, I can get an erection but it is rather painful and uncomfortable. My orgasm function is exceedingly diminished and poor. I also leak and spray large quantities of urine during what now passes for an orgasm. So things have tailed off to nothing, which is probably ok since my wife is no longer interested anyway. Life goes on.

UPDATED

March 2017

I am now at the 5-year mark post prostatectomy, so I can comment on the long term effects of the surgery. My PSA is still undetectable, so things look good for cancer control.

Regarding urinary function, it is not very good. I leak a lot, especially after urination. I wear a pad when I have to get dressed up for some event. This has actually gotten worse over the past 5 years.

Regarding erectile function, it has actually improved somewhat recently. For the first 3 years post surgery, it was essentially zero. I did not like the side effects of the ED treatments, so I did not use them. In the 3-5 year period, I have had some improvement so that I can now have regular intercourse with no medical aids. It is certainly not like it was before the surgery, but things do work somewhat.

In summary, my overall health is good at age 65, I feel pretty good, and I keep busy (retired). I am thankful the cancer is under control and in view of my pathology I think surgery was the best treatment. However, make no mistake, this surgery definitely has an effect on a man's quality of life!

Ray's e-mail address is: arroyo42@cox.net


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