I had a bout of prostatitis in August this year and my PSA went from 4 to 7. So my GP put me on Cipro for three weeks but a subsequent PSA only came down to 6.7. So off to the urologist who said DRE negative but let's do a biopsy just to be safe.
Biopsy was not fun and I had a haemorrhoid that was not happy - but no big deal. Well the doc said I have cancer. Report stated right mid core biopsies shows moderately differentiated prostatic adenocarcinoma - tumor involves 50% of one core and 10 to 15% of the other core. Cancer also in right apex with 40% of one of two cores involved. No cancer in right base or anywhere on the left side.
I was in disbelief! This is something that happens to some other poor guy. Well I guess this time I'm that guy. My uro was reassuring that it is a "garden variety" version of the disease and we got it early. Needless to say I had a bad rest of that day but I quickly turned fear and doubt into a research project. I work for a scientific instrument company and have been working with computers for over 30 years so needless to say I love the web!
I have been on numerous sites and have really educated myself on this terrible disease. I stumbled onto this site and it has been a godsend - especially in those early days after diagnosis. You guys are the best and I would be terribly remiss if I didn't contribute my story. So here's where I stand.
My uro said seeds or robotic surgery. I love the guy - he did not push me in either direction. He use to do open surgery but now assists with another fine doctor doing brachytherapy at our local hospital here in Delaware. So I'm leaning towards the robot. I have a consult the day after Christmas at Johns Hopkins with a Dr. Jarow who is one of several doctors at JH who do the da Vinci procedure as well as the open surgery. I also have a consult Jan 15th 2008 with Dr. Mc Gunnies at Bryn Mawr Hospital outside of Philly. He also is a pioneer with the robot and has done many of them. Experience is a good thing.
I'm kind of negative on the seed thing because of what I have read here and elsewhere that the immediate aftermath is not so bad but as time goes on because of the radiation the neuro bundles and other blood vessels and nerves are negatively affected. So yeah with the surgery you get beat up upfront but you improve to a reasonable state as far as sexual and uro in about a year (hopefully). With the radiation you're okay upfront but have more negative side effects down the line. I have read from you guys that glow in the dark or you guys that have been attacked by robots and your information has been wonderful! However I'm still sorta undecided but leaning towards surgery because I'm fairly young and the better salvage options should that be necessary.
More after my consults. Any feedback on the robotic procedure is appreciated.
I forgot to mention the barrage of tests that we all go through. All tests scans etc were negative - thank God!
I had my consult Dec. 26th at Johns Hopkins with Dr. Jarow who has agreed to do the robotic procedure on Jan. 18th. After talking to Dr. Jarow I knew he was the one I wanted to do my surgery and I am very fortunate to have him. I did not want any more consults - I have done my homework and I am satisfied with my choice of hospital, surgeon, procedure.
Several of you guys responded to my request for advice and I thank you all for your feedback!
I will update after I get home from surgery.
I had my Da Vinci laparoscopic prostatectomy at Johns Hopkins on Jan. 18th. Needless to say it is a day I will never forget. My wife and I actually arrived in Baltimore (only a one hour drive) the day before for some pre-op tests and evaluations. The people at JH were all very courteous and efficient. We were outta there in a couple of hours and then off to our hotel. By the way the hotels in Baltimore offer a discount for JH patients.
Surgery day... Surgery was scheduled for 2:30 PM so the morning dragged on with me not having anything to eat or drink. We were told to be at the surgical center by 12:30 and once again everything went smoothly with admission and pre-op. They started an IV and I put on the TED stockings. My two sons drove down and together with my wife joined me in pre-op. It was great to have my family there and we joked around and talked about the NFL playoffs. It really helped to take the edge off of what was about to happen. The anaesthetist showed up with forms to sign and an explanation of his procedure and the breathing tube. For some reason the OR was backed up and they finally took me back at about 4PM.
I actually walked into the OR and after looking at the robot and the console I lay down on the table. They strapped me down because the table is elevated to a 45 degree angle with your head down so that the your organs will hang down - no kidding. The operating room looked so surreal. There must have been at least 10 doctors and nurses prepping me and doing various other tasks in the room - really strange feeling at this point. A couple of quick jokes about how I wanted to see the calibration date on that thing (the Da Vinci) and the next thing I knew I was out like a light!
When I came to I had to stop for a second to realize what had happened to me. Then it hit me - there was a lot of pain coming from my abdomen and my penis and a very nauseous feeling as well. The doctor and nurses in recovery were great but it took them about an hour to get my pain and nausea under control. After an additional half hour my wife and sons were allowed to visit - one at a time. It was getting late so after my wife came in a second time I told her she and the boys should go - there is nothing they can do for me. So they took my advice and went back to the hotel. It's getting towards midnight and I'm still in recovery because they can't find me a room. That's okay with me because I'm getting constant care. The only problem in recovery is they will only let you swab some water in your desert dry mouth. There is good reason for this because just that little bit of water made me nauseous. I finally got to a room by 1AM and they said because I was a good patient it was going to be a private room. Not much sleep that night because of hourly checks of my vitals and the six stab wounds in my abdomen.
Early Sat. morning my surgeon came in with the good news that if I felt up to it I could go home later on that day. He felt as though the cancer was confined to the prostate but that we would have to wait for the path report. He also said he felt very good about his ability to spare out the nerves and that he got a good connection to the bladder. I thanked him for all of his efforts and off he went to his next patient.
My wife joined me that morning as was surprised to see me up and walking the floor. I really felt pretty good but my abdomen was really swollen and I had a lot of pain. In order to get out of "jail" I had to pass gas so the rest of the morning and afternoon I walked the halls endlessly. Finally around 3PM I passed the test and was free to go. The nurse gave me my instructions on the Foley and home care etc. The ride home was a little rough - I should have asked for a pain pill before we left JH. Now I had to wait till we got home and the prescription was filled for some relief. Do not let your pain get ahead of you. Saturday night was not pretty and I walked around the house hoping to pass gas and praying for a bowel movement. None came so I took another pain pill some mineral oil and a laxative and tried to sleep. I did manage to get about four hours or so just from sheer exhaustion. Sunday was a better day with things down below resolving - thank God! Still Have a lot of abdominal pain - not fun.
The next 6 or 7 days are pretty uneventful- just trying to walk outside further and further each day but that darn catheter is a real pain - literally! It was taped to my right leg and had to be re-taped a few times. JH also has a one size fits all bag which I could pin to the inside of my sweats or loungewear and it also was big enough "just" for nighttimes.
I went to my local GP to have the catheter out on the 28th - eight days was enough! It was more painful ripping the tape off my leg than having the catheter pulled out. This past week I get better every day - abdomen still sore and swelling of my scrotum and testicles has been real uncomfortable. Doc says it's normal and all my swelling will go down gradually as things heal - I just have to be patient. Other than that I feel pretty good.
It's Sat. Feb. 2 and everything continues to improve in baby steps. My continence since the catheter came out is pretty good. I'm dry at night and for the most part in the morning but as the day wears on, I leak. Especially when getting up or walking or sudden movements. My bladder is slow to tell me I have to go so I force myself a little and if I do this the afternoon / evening squirts are not too bad. I go through a pad or two a day and feel very grateful having read of other guys this far along who do not do as well. Keep the faith guys!
My post op path report was the best news any of us can hear (organ confined). My heart goes out to others who are not so fortunate and are dealing with more advanced stages of this bastard. I am a little over two months out from surgery and things are improving day by day. My first PSA was "undetectable" - My continence is great - just a squirt here and there getting up and down or working out in the gym. I have to remind myself to void even when there is no urge - this keeps the squirts to a minimum. I still wear a small feminine pad just for security daily. I had several accidents at night but that was due to too much fluids before bed. I'll be honest here - a couple of beers!!! Anyway the last few weeks have shown great improvement in this department. I owe this wonderful result to the skill of my surgeon! I only kegeled randomly before surgery and every other day since surgery and never overdo it. I think (IMHO) too many guys are 'Kegel crazy' and do too much. Every other day is what my surgeon from JH says and the best exercise you can do is to stop the stream while you're voiding - and I have done it-and I believe he has advised me well.
As far as ED I am totally impotent. I can get some fullness and length (maybe 3 or 4 inches) with lots of manual stimulation. My wife has been great and we have had a number of sexual encounters using our hands and toys to keep our interest in one another going. Guys I believe you have to do this and be creative and keep going with your partner for your sexual health. I have orgasmed every time after alot of stimulation and they have been both intensive and weak but I think they will get better as I heal - at least I hope. I go for injection therapy at JH on 21 April and will report back. My Surgeon Dr. Jarow is an expert on ED and has written many papers and done much research on the subject. I am in good hands. More later and thanks to Terry and all who contribute to this site!
Sorry I haven't updated in awhile - where does the time go? Anyway since my April update I have had some ongoing improvements. My second PSA was undetectable so great news on the main issue. My continence is excellent. Like others I only have a drop when I move the wrong way in the gym etc. I have kinda gotten lazy about doing my Kegels so I am trying to get back on track because they do help.
ED continues to be an issue with little progress as I am about at the sixth month post op. I can get some fullness with stimulation and Viagra and / or Cialis help a little. What has really been great is the Bimix injections I have been doing since April. I have had only one or two failures when I was careless and hit a small vein. My doc (who is one of the worlds experts on ED says as long as I do the injections as taught I should not have any issues with fibrosis. Well I'm injecting 3 ml's and the results are amazing. I stay hard for at least an hour - sometimes more - and so my wife can enjoy multiple orgasms.
It takes me longer to climax so again that's more time for enjoyment for both of us. My orgasms are sometimes great and other times not so great. So I know things are still healing and I just have to be patient. I do leak a very small amount of urine especially at orgasm so I must remember to empty my bladder before sex which helps a lot. My doc also prefers the injections over the pump and says they tend to "jump start" natural erections. I have trusted this guy from the beginning and see no reason to doubt him now.
So to sum things up PSA zeros, continence great, and if there is a silver lining I can laugh at the Avodart commercials. Sex is more enjoyable now that I can actually do the dirty deed again with the injections. My wife who has been a wonderful understanding and patient partner is enjoying having me be more normal in bed. In short guys life is good. I am going to continue to work as hard "no pun intended" as I can to get the little guy big and strong again. I am only 57 and I have got a lot of lovin' to do!
A footnote - Too many guys don't discuss their sex lives and I understand but if you can help another guy who is looking for advice then why not share your experience. That is why I have given you the details of my "sexual healing" as Marvin Gaye would say!
Well it's been over a year since surgery and I am happy to report my one year PSA is undetectable. My doc says only yearly PSA tests from now on.
My continence is very good with just an occasional squirt when I move the wrong way or pick up something heavy.
Unfortunately my ED has improved very little. The pills "i've tried them all" only give a fullness but nothing useable. During and after orgasm it gets harder but not enough for penetration. I am still taking 50mg Viagra daily for bloodflow and Bimix injections for sex. The bimix works great and I am using less dosage for the same results I got with higher dosage. I started out with .03ml but am now down to .15ml. Stimulation makes it even more erect and usable so I think I am S-L-O-W-L-Y improving in this department. Also I have to remember to empty my bladder before sex or I will leak. Doing Kegels has also helped with this issue. It takes a lot of patientce.
I will report back in a few months - Good health to all!
It has been two and a half years since my surgery - sorry for not updating but not alot has changed. My PSA is undetectable my continence is very good and my ED is complete. So two big pluses and a big minus.
I am currently on trimix after bimix started to fail. I had heard you can build up a tolerence. The trimix gives me a more firmer erection with some initial pain but the more I use it the less I notice. There is also some lingering pain along with a continued unwanted erection for some time after orgasm. I have learned to adjust dosage to keep this to a minimun and still get the job done.
So after 2+ years without any improvement i.e. no nocturnal erections and no response to the pills - I am going for an implant. I have consulted with Dr. Bruce Garber in Philadelphia. I will update on all of this late August when I am scheduled for surgery.
Here is my update on my penile implant. I consulted with Dr. Bruce Garber who is a very experienced impotence specialist in the Philadelphia area. He is an expert in penile implant surgery having done thousands of them over the last 20 years or so. He has written hundred of papers on the subject and trains other docs on the various procedures.
I gave him my history of ED post RP surgery with the pills not working and then the bi-mix working fine for awhile but then failure and finally tri- mix and the painful two hour erections and the hit and miss that all of us injectors have experienced. Also whether brought on by the prostatectomy or the shots I had the beginings of Peyronies Disease with a slight bulge on the right side of the penis. The doc also thinks there is some fibrosis.
I decided to go for the implant and surgery was scheduled for August 19, 2010 at Hahnemann University Hospital in the heart of center city Philadelphia. I had to do pre-op tests (the usual ekg blood chest xray etc.) a couple of weeks before . The surgery is on an oupatient basis. My wife and I arrived early on the morning of the 19th. I was taken back to pre op for the IV and the multiple antibiotics that are slammed into you. Then I was escorted back to the OR and the hour or so surgery was done.
The usual entry incision is thru the scrotum but because I had scar tissue in the pelvic region where they place the reservoir (because of my RP) - a four inch vertical incision was done just above the pubic bone instead. I was implanted with the Coloplast Titan implant. After an hour in recovery and then another hour having liquids and something to eat I was free to go home with both a pelvic drain and a catheter. How about that! - in at 8:30AM and out by 3PM.
The staff at Hahnemann were absolutely excellent. I can't say enough good things about the caring and professional way I was treated by all. The hour ride home was not bad and I was given Percocet for pain and an antibiotic to stave off a dreaded infection. The next day we went to the good doctor's office to have the drain and catheter removed. That was pretty short and sweet and my wife and I went for a nice breakfast - (I was feeling that good.)
The next few days were spent taking have a nice day pills and sitting with my feet up. I wound up going a little stir crazy during the first week and moved around more than I should have but overall the pain pills did their thing and my recovery went well. I was very sore at the inside base of the penis (which was left partially inflated) and very sore in the scrotum and slightly sore where the resevoir was inserted and the incision area was tender too.
The second week was a little better but still very painfull especially in the scrotal and perenium areas. I should also say that at this point I am off the Percocet and using extra strength Tylenol instead. On Thursday the 7th I had an appointment to see the good doc and he deflated the implant and that eased alot of my discomfort. He said everything looks good and he would see me in a month. He showed me the directions to inflate and deflate and basically said to use it when I felt comfortable.
Well I'm still in a fair amount of pain so that won't be happening for at least a couple of weeks or so. Most of what I have read on other sites and blogs say 4 to 6 weeks before trying and the first few cyclings of the implant are usually a bit painful. I will update this story when all that happens. I also wanted to say that right now I do feel the cylinders and pump and some of the tubing and when I touch those areas it does feel weird. I've heard that over time those feelings go away and the parts just basically become part of you.
I'll check back in a couple of weeks and let you know how I am doing.
I wanted to give an update on my penile implant experience for those that are considering this solution for permanent ED.
I am now six months out from surgery and things have improved slowly but steadily. For the first six weeks after surgery there was a lot of pain but was made tolerable with extra strength Tylenol. From six weeks till the present there was very gradual reduction of pain to the point that even when pumping up to the max and having a long sex session there is no pain. This is the big payoff men. You go through a lot but there is a big reward for your patience. Dr Garber was up front with me that it would take six months to heal and he was dead on. So here are the pluses and minuses as I see it.
The big plus is I am able to perform anytime I want for as long as I want. So for that fact alone you would have to say my ED is cured! I am less and less aware of the hardware and the pump has been placed perfectly in the scrotum so that from flaccid to full rock hard erection takes about 15 pumps or about 10 seconds. I can't tell you how great it is to be spontaneous with the wife again. Also I had some shrinkage after prostate surgery but now I am about 3" flaccid and it looks and feels so much more normal.
Now a few of the negatives. I've lost some sensitivity so reaching orgasm takes a lot longer. Orgasms are great once I get there - it's the getting there that's the issue. I'm working through this and have been told with time I will be back to normal. One suggestion about orgasm - mine are the most intense when standing or kneeling missionary. Also doing Kegels (not too many) has helped with better orgasms.
Another negative is when changing positions you have to be careful as bending the penis is painful so if you're doing wife on top she has to be a little more careful.
Finally I want to address the issue of loss of length. I HAD NO LOSS OF LENGTH ! The glans (head) is slightly smaller and does not swell till orgasm but this is because of the prostatectomy - not the implant surgery. I have been told to try a Viagra to help with this and I will let you know how it works.
That's it for now - my PSA is zero my continence is great and now my sex life is as close to "as before as possible" considering all that has happened.
P.S. This is so much better and spontaneous than the shots or the pills IMHO.
Just a quick update as no change from last year. I am now almost 4.5 years out from my prostatectomy and I am still pulling 0's. I am also 1.5 years out from my penile implant which continues to function flawlessly. I still leak a little during sex if I forget to void before hand. [This is a very common side effect and is termed Climacturia.] Being able to be spontaneous with the wife has been great and I am always 100% ready in just about 15 seconds. I do miss the arousal stage (thoughts or visual causing an erection) but once we get physical itis very pleasurable and I have a great orgasm that is more intense and longer lasting then before. It does take longer for me to orgasm but I don't see that as a big problem. Just getting older might be contributing to it.
So the bottom line overall life is good and I continue to exercise regularly and watch my diet (most days) and moderate alcohol (good wine and micro brews). You gotta live a little!
It has been 5-1/2 yrs. since my surgery and all is going well. My PSA continues to be 0 and my continence is very good. The only issue on continence is I really have to shake it to get all the urine out from the urethra - not a big deal. Also I need to empty out the bladder before sex or I will leak slightly. I do kegels as much as I can and they help with urine control.
As far as sex goes the implant (coming up on 3years since implant surgery in August)works perfectly and I have good orgasms although somewhat delayed. Might be a little old age creeping in here causing some reduced penile sensation. But with the implant I stay rock hard for as long as I want so I always get the job done!
So at 62 I'm cancer free and feel really good I'm not peeing my pants and I'm a sex star in the bedroom - well sorta. I have no regrets about treatment. My cancer was sissy cancer but it was heading in the wrong direction with a post op path of gleason 3-4. By the way "AS" was not well recommended 5yrs. ago and I would not deal very well with 3moth PSA's and yearly biopsies. The damn thing wants to rot and you might as well get it out and move on with life -IMHO. I've over come the side effects and have tried to make every negative into a positive. It's just my philosophy - Life is good!
Six years since surgery and four since penile implant. PSA continues at 0 and 100% successful erections with implant. Miss the arousal stage of sex but being able to perform and be absolutely sure each time it's going to work is priceless. It still takes a long time to reach orgasm but more creative foreplay is helping reduce that minor bother. I have no continence issues except an occasional drip in the afternoon or in the gym or when lifting - no big deal. Also have to make sure to shake out those extra few drops post urination. Also have to empty bladder before sex or I leak just a couple of drops. So except for some minor issues life is good and I am not looking back. I am cured of cancer and have very good urine control and sex is good with a little extra help from my honey - it's different but good! Good health to all!
Nothing new to report except another year older. Psa-0 and no urinary issues. ED not an issue with implant. Going on 5 years with Coloplast Titan. Works great. My best to all!
[Sadly, we were informed by Jeanne that David passed away in August from bile duct cancer.]