Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

    GOLD    
This member is a YANA Mentor This is his Country or State Flag Member's Photo

Bill Jordan and Denise live in Alabama, USA. He was 56 when he was diagnosed in June, 2006. His initial PSA was 4.30 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

At this first of 2006 I changed doctors because I was not confident that the doctor I had at the time was competent enough to meet my needs as I got older. My new doctor is an internist and put me through a battery of test. All came out okay and my PSA was 3.2 ng/ml. The year before it was 2.8 ng/ml. Because of this change he felt that I should see a urologist just to be on the safe side.

The urologist's DRE (Digital Rectal Examination) did not indicate any problems so the urologist suggested that we wait three months and run the PSA again. After the three months the PSA came back at 4.3 ng/ml. At this point the urologist recommended a biopsy. Following the biopsy the urologist told me that he could not see anything on the ultrasound and felt that the results would come back negative.

A week later I went back for the results. My wife did not go with me this time because something came up at the last minute that she needed to handle and after the comments of the urologist we felt that the report would be good. That turned out to be a mistake! The urologist was not very sensitive as he came into the exam room and said that he had not had a chance to review the report so we would look at it together. The bottom line is that of the 10 cores that were taken one came back with Adenocarcinoma in 40% of the sample. Gleason score was 3 + 3. The stage was rated T1c. Of course the report knocked me off my feet emotionally and for a few minutes I had a hard time listening to the urologist. After he went through the treatment options he recommended a open radical prostatectomy. My background is manufacturing management and I have always been one to demand proactivnenss. I had already done some research on treatment options so I knew something about them before the urologist went through the list. I have been very healthy during my life having never been in a hospital or had any serious illness. I had promised myself that if I ever did have a serious medical issue that I was not going to trust my life to a local physician but would go to a university medical center. I told the urologist that I wanted a second opinion on treatment recommendation and that I wanted to go to a university medical center. He suggested that I go to Vanderbilt University in Nashville, TN which happens to be only two hours from where I live. An appointment was set up.

At Vanderbilt I met with a nurse practitioner first and she was excellent spending at least 45 minutes talking to my wife and I. Then Dr. Michael Cookson came in and basically had the same comments as the nurse practitioner. There are three urologist at Vanderbilt that do surgeries with two of them doing open and one the robotic. Before the Vandy appointment I did hours of research. I felt that the cancer was contained and I wanted it out but the impotence and incontinent complications concerned me. The more I researched the more confused I got. I finally knew that I had to make a decision. I knew that any type of radiation treatment bascially negated any follow up surgery. If I was older I might have gone with a radiation approach but I decided that I wanted to leave that as an option if surgery did not work. Dr. Cookson then set me up to see Dr. Joseph Smith. Dr. Smith is the head of the Urology Clinic at Vandy and does the robotic approach. He has done over 3,000 of the open types and in the last three years has done over 750 of the robotic laparascopic procedures.

I have decided to have the robotic and it is scheduled for November 1st at 10:00 AM. Dr. Smith's complication rates are very good and I have faith and trust that in his skill and compassion. For all of those men that have recently been diagnosed with PC I encourage you to do your research. Unfortunately you will not find it to be easy to make a decision. I wish you luck!

UPDATED

October 2006

As I have reviewed and read the experiences here on YANA I have realized that I connect to each one of the men that have shared their story and the additional chapters that are added through the updates. I wish that there was more so I have decided to commit myself to providing as much of my experience as possible so that the unfortunate brethren that join us PC victims have as much information as possible.

Today I have returned from my pre-op appointment for my surgery that is scheduled for November 1st. I have never had surgery before so I was nervous about this appointment and my blood pressure showed it. I guess the one thing that came out of the appointment was the emphasis placed upon the potential pain from the gas that is used to blow up the abdomen. I was told that the pain will be in the shoulders as it will radiate from the pressure placed on the diaphragm. I guess I have been somewhat surprised at the difference in the testing that has been done by various surgeons prior to surgery. In my case I only had an EKG and typical blood work done. The medical center will be getting all of my records from my primary care provider.

A couple of weeks ago I did pose several written questions to my surgeon based upon the experiences shared here on YANA and also from other support web sites. I am gald that I did. Some of the answers provided by my surgeon are as follows;

Penile Rehabilitation - There is a protocol established at this university based medical center for prostatectomy caused ED. In my case at 3 weeks after surgery I will be started on one of the three ED medications. Most likely it will be Viagra. They will eventually try all three to see if there is a different response. I am hoping for a quicker then normal return of erections. My tumor is not near the margin so I am a good candidate for the bilateral nerve sparing procedure. If the medications do not provide a quality response in erection then a VED will be prescribed. I will also be offered the injection approach if I so choose. Like a lot of you out there the thought of sticking a needle in my penis is difficult to accept at this point but if that is what it takes then I will definitely do it.

Kegel Exercises - There is no data that supports that doing kegels prior to surgery improves continence post surgery. While that is the case there is nothing wrong about doing the kegels and if I want to do them then go ahead.

Catheter - The amount of time that the catheter stays in is dependent upon the size of the bladder neck that is formed. A larger neck requires more time sometimes up to 10 days. The norm for this medical center is 6 to 7 days.

Bladder Spasms - I was concerned about this as several men have reported awful experiences with this occurring. I will be prescribed medication that will prevent these from occurring.

Finally, as the date for surgery approaches I find myself becoming more anxious and depressed. It is not in fear of the surgery but the fact that however you look at it this will be a life changing event. I will never be the same again. That is a fact. In my career I have always embraced change as being good. In this case, I am not so sure but perhaps good will come out of it.

I will provide an update after my surgery.

UPDATED

November 2006

This is adding to the journal that I intend to keep going to help those that follow the path that I am trodding. This may be a little long but I want to provide as many details as I can as I found those provided by other PCa victims to be comforting.

Tuesday, October 31, 2006: Today is the infamous bowel prep day for my surgery tomorrow. Started the liquid diet. At about 11:00 AM I drink the bottle of Citrate of Magnesia and while doing so read the "very pleasing lemon taste" on the label. Talking about false advertising. My anxiety and apprehension are peaking. My wife had bought me a Soduko puzzle book and I start doing puzzles. Found that this did help take my mind off of the upcoming event to some degree. At 5:00 PM my surgeon's office calls and tells me that the guy that was scheduled at 8:00 AM has an EKG problem and they were moving me up from 10:00 AM into his slot. The university medical center is about a 2 hour drive and now I have to be at surgery check-in at 6:30 AM. This just adds to my anxiety. I take the pills on the schedule that they gave me. My wife goes to bed and I try but it does not work so I get up and do more Soduko's.

Wednesday, November 1, 2006: I got no sleep and at 3:30 AM begin to get cleaned up for the trip. We hit the road at 4:15 AM. I decide to drive to help keep my mind off of the surgery. It is somewhat foggy which helps me have to concentrate on driving and not what it getting ready to happen to me. Arrive at surgery check-in at 6:15 AM. At 6;30 they take us back to the surgery holding area. I get into the gown and they plug in an IV and draw some blood. I begin to meet a lot of people. The tech preps introduce themselves, the nurse anesthetist come by and tell me what will be happening. They check my throat which I assume is to be sure that they will have no problem inserting the breathing tube. The anesthesiologist comes by and introduces himself. He tells me that the pre-op blood test that was done on me two weeks prior indicated high potassium but he did not believe it and was having it checked. He comes back in 5 minutes and tells me it is normal. My surgeon's assistant then comes by and introduces herself. She will be making the incisions. She writes her initials on my abdomen just above my navel where the large incision will be made and she shows me where the others will be at. The one common theme among all of these people is that all of them ask me the same question, "What procedure are you having done today?". This is a quality control check to be sure there are no mistakes.

At 7:30 AM the two nurse anesthetists come in and say they are ready. I kiss my wife goodbye and get a little emotional. I have never had surgery before and although the mortality rate for this type of surgery is less then 1% it strikes me that this may be the last time I see my wife. They then tell me that they were going to give me a shot of Valium to calm me but once that hits I am gone. This did not surprise me as in the pre-op meeting I was told that I would not remember it although I would still be conscious and would actually help them get me on the surgery table. At 11:30 AM I hear the recovery room nurse telling me the wakeup and that I was in recovery. I know it is 11:30 AM as that is the first thing I ask. I am surprised to be wide awake and not groggy. I do not have any pain but I am having a bladder spasm. I tell them this and they give me a suppository and a pill and it stops immediately. They then give me a device to suck on to expand my lungs and prevent pneumonia. I suck on this and find it no problem to pull up the indicator to the top. They are pleased and tell me that I was the only one in the recovery room able to do this at that point. My wife is informed by the surgeon that I am in recovery and that everything went well. We were told I would be there for two hours. It was a very busy morning and there was not a room available after two hours so I stay in recovery another hour. I am feeling great and pleasntly surprised that I am having no pain. Other then the pain medication they told me that would be given with the anesthetic I do not have to have anymore. Finally I am headed to a room and we meet my wife as she was headed down the hall to check on where I am at. Boy, what a site to see as she looked like an angel to me at that time.

At 2:30 PM I am in my room. My floor nurse comes in and introduces herself along with the floor care giver. I have another bladder spasm and they give me a small pill and just enough water to wash it down. The spasm stops and it was the last one that I had. The medication for the spasms makes your mouth extremely dry and the protocol I was under was nothing by mouth for the rest of the day, not even ice chips. I had asked for this in recovery and was told that I could not have it. They did bring me a small cup of water and a sponge on a handle and allowed me to swab out my mouth which helped. I am pumped and not the least bit sleepy or groggy. I begin to call relatives and what a surprise for them to be hearing from me instead of my wife. At about 6:00 pm the changing of the guard occurs for the nurses and I am told that the plan for this shift is to get me up walking. I tell them that I am so pumped that I am ready to walk right now. They are somewhat surprised that I am so alert and ready to rock and roll. For all the anxiety and apprehension I had before the surgery I am now extremely calm. My blood pressure is extremely good. I survey my abdomen. The first impression is shaving that was done. This was done after I was given that valium shot so this is the first that I see of it. I am shaved from just below my sternum to right above the pubic bone and all the way across from one side to the other. I am a hairy guy so there was a significant contrast. The second impression was the catheter. It is a lot bigger then I was expecting. I have to say seeing that small snake running up into your penis does take a second or two to digest. My immediate thought is, "How is that going to feel when it is taken out?" At 8:00 PM they come to get me up to walk. The air bags on my legs are taken off, the Foley bag hooked onto the IV stand and slip resistant socks placed on my feet. Getting up was a little difficult due to the soreness in the abdomen and I had to have help. Got on my feet and did not feel dizzy. They wanted to know if I was nauseous but at that moment I was not. We begin to walk out into the hall and around the nurses station. After about 100 feet I begin to get nauseous and ended up dry heaving. I immediately felt better and did not get nauseous again. Back to the bed and hooked back up. The pulsating air bags on my legs are going off every few seconds and there is no way I can sleep. Nurses tell me that I can get up again if I want and take a walk which I did. After the first two walks with the nurses assistant I am now allowed to walk alone. I do this for the rest of the night since I cannot sleep anyway. I am still very surprised at how pumped up I am which I attribute some to not taking any pain medication. My wife is a sleep on the pull out bed in the room and I am walking all over the place. One of the male nurses laughingly tells me to slow down. When I come back by him again I counter by telling him that if he inserts a catheter and IV and grabs a stand I would challenge him to a race. He laughs and says no way would he do that.

Thursday, November 2, 2006: Okay, I am told that I can now have a liquid diet. I plead for a cup of coffee so the floor care giver brings me one from the nurses kitchen. That it the spot. In comes breakfast which had a lot to be desired. I eat/drink what I can and then get back to walking. At 8:00 AM the surgeon and his nurse practitioner come in. We discuss the surgery and he tells me that it went well. My prostate was enlarged and he took extra time to be sure that he did as good a job on the nerve sparing as possible. I ask about how he felt about the bladder neck reconstruction and the nerve sparing and he said that he felt very good about it. He tells me that while we will have to wait on the pathological report to confirm that he did not see any indications that the cancer had gotten out of the prostate. I was expecting this but still when he said it I had to take a deep breath. I am told that the nurse practitioner would begin the discharge process. My wife and I are shown a video on how to take care of the Foley which help tremendously. I am walked through my restrictions, appointment for removal of the catheter is set up, the penile rehabilitation schedule is provided and all prescriptions are written. At around 1:30 PM the nurse practitioner comes in to remove the JP drain. She tells me that men say that it does not hurt but feels funny because it comes across the whole abdomen when she pulls it. Tells me to take a deep breath and to blow it out and when I do she pulls it. I immediately tell her the other men lied as it did hurt. The pain goes away in a few seconds. I suspect that the men that said it did not hurt were taking pain medication and I was not. The IV is removed and the leg bag is hooked up for the Foley. I get dressed and at 2:30 PM exactly 24 hours from the time I hit the room from recovery I am out of there. My wife and I stay at a local motel that night for precautionary sake. I do eat some chicken noodle soup and drink lots of liquids. I begin passing gas once I started back on liquids and had a bowel movement before I left the hospital and another this night. The pumped feeling I have been having ever since the surgery is now beginning to wain. At about 7:00 PM I take two Tylenol PM's, hook up to the night bag for the Foley and grab the novel I am reading. Within a few minutes I am out. I wake up about midnight with a little discomfort. There is a little blood where the catheter enters my penis and this was expected. It had dried and was pulling on it. I get up, clean it off and apply neosporin. I walk in the room a while and then take two more PM's and off to sleep I go.

Friday, November 3, 2006: My wife and I get up about 7:30 AM. I feel good. I get up and start to shave and then get a little dizzy. Okay, I now know I am pushing it a little too much. I slow down wait a while and then I am able to clean up. I have another bowel movement. One of the reasons that I have not needed any pain medication other then Tylenol is that I have not had the gas pains other men have had. The nurses were surprised by this but I have been passing gas a lot and the bowel movements have really helped get me back to normal. I eat a light breakfast. This is the first solid food that I have had since Monday night. We hit the road, grab a Starbucks and the nurse practitioner calls checking on me. I tell her the only issue I am having is that where the Statlock clamp was placed on my hip for the Foley causes it to pull on my penis when I am sitting. For the ride home I take the Foley out of the clamp. They gave my additional Statlock's so when I get home I take off the old one a nd put a new one on where it needs to be. Get home and take a walk. I talk to a lot of people and feelign great. Take the first shower that I was allowed since surgery and it was great. At 9:30 PM I take my PM's and grab my book and off to sleep.

Sunday, November 5, 2006: Things have just gotten better and better. Most of the soreness in my abdomen is gone. I am back on a normal diet. The bloatedness is going down some. I expect to walk about a mile today. From here the next step is Foley removal and path report on the 13th. I will update at that time.

UPDATED

November 2006

It is now 12 days post surgery and I had my appointment at Vanderbilt University Urologic Clinic today. Received the post op pathology report and it was all good news. Although I was expecting this it was still an emotional release when I was told. The specific results were that the tumor was totally confined to the prostate gland. All lymph nodes, seminal vessels and prostate margins were clear. There was one tumor located across both halves of the prostate and making up about 5% of the prostate.

The Foley catheter was removed. The nurse told me to take a deep breath and she pulled it out. There was no pain just a little discomfort as the tip of the catheter came through my penis as it was sore from the catheter. I have some leakage but no gushing. I have urinated three times so far and I am able to stop the stream and start it again. I am doing Kegels again now that the catheter is out.

The perineum tenderness is now gone but I am having occasional aching and throbbing in the area where the prostate was located. I have started on generic Aleve for inflammation and I am taking Ibruprofen for the discomfort which is helping. All of my incisions are healed and I have no lingering soreness in my abdomen.

I am very pleased at my progress. The next step is to regain erections. Viagra therapy will start a week from Wednesday.

UPDATED

December 2006

This is to continue the journal that I have committed to support others that are traveling the path that I have trod. This week I had my six week post op follow up with my urologist. It was also the first PSA test following surgery.

PSA Test - The PSA test came back undetectable which I was expecting but it really felt good when I got the call. I will have another check done in six months. I have been asked by others on the HealingWell forum that I participate on why six months instead of the standard three months. I really did not know that my urologist had scheduled the next one for six months until I checked out and was setting up the next appointment. The only explanation that I can offer is that when we discussed the post op path report again he pointed out that it was as good as you could get with the cancer being in one location and very small and right in the middle of the prostate. Having this definitive information is so comforting. If I had chose another treatment that would have had me dependent upon each PSA check to know whether or not the cancer was gone I know that I would have been a mental mess.

Incontinence - The leakage is a lot better now at about four weeks after removal of the catheter. I am using the lightest poise type of pad. I usually use one to two a day. I am dry at night and primarily have stress type of leakage during the day. I believe that this will get better fairly quickly and I hope to be out of the pads in a month.

Impotence - Three weeks to the day after surgery I started on the penile rehabilitation program prescribed by my urologist. This program is to take 25 mgs per day of Viagra for six days without any sexual stimulation and then on the seventh day take 100 mgs and try to have sex. I have to say that I had high expectations on the day I took the 100 mgs and my wife and I tried but nothing happened. This has been the case now for about four weeks. I talked with my urologist and he insists that normal erections will come back but intervention will be needed until then. We talked about injections and a vacuum pump. Since my insurance will cover 80% of the cost of a vacuum pump I decided to try that first although the injections intrigued me because they tend to provide a hard erection. I ordered a Vacurect pump and it should arrive in the next day or two. I will continue the Viagra and then use the pump. I am looking forward to having intercourse again.

Sex and Intimacy - The fact that I cannot get an erection has not prevented my wife and I from having sex. I still have the desire but with the leakage and no erection it dampens the situation literally. Despite this we have enjoyed our sexual times and using a penis sex toy I have enjoyed bringing my wife to climax. She has been feeling somewhat guilty about it. This week during our "fun" time I had a great orgasm. I do not know if this will be the case every time but it was longer and more intense then ones I had before the surgery. Some of the men on the HealingWell site also report the same thing. Once I get an erection with the pump and/or injection I will use a condom to help with the leakage.

Looking Forward - Even with the leakage and ED I am more then ever sure that I made the right decision. My cancer is gone and life is great. I will be able to see my grandson grow up and enjoy doing things with him. I will make my dream of having a log cabin in the Tennessee mountains a reality.

UPDATED

January 2007

Following up from my last update I did receive the Vacurect pump just before Christmas. It took several trials to learn how to use it and find which tension ring worked best. I have been using it every other day for rehab purposes. I also am still taking 25 mgs of Viagra daily and using 100 mgs when having sex but I have not seen any difference between the two doses as neither one produces an erection just lengthening and thickening. The Vacurect does produce an erection capable of penetration and that has been pleasant. The tension ring though does cause discomfort and it is difficult to be "in the moment" with my wife when there is that constant pressure. This has caused me to lose some interest in having sex. Because of this side effect and the fact that the Vacurect erection is still not a firm erection I have made an appointment with my urologist's office to start penile injections. I have researched this and the stories of men that have tried it vary considerably. My urologist told me that there are hundreds of men that his clinic has on penile injections and they are very happy with the results. I have not read on this forum many cases of penile injection experiences. Once I start the injections I will provide an update with my experience.

On the incontinence front I am now not using pads exactly two months to the day after removal of the catheter which is what my urologist predicted. I only leak occasionally when I sneeze and that is only if my bladder is full. I am able to walk, lift heavy items and squat without leaking. What leaking I get now when sneezing is just a few drops. I still leak urine when I have an orgasm and but that also has gotten better. It has definitely been a confidence boost getting almost back to normal in this area.

UPDATED

April 2007

It has been a couple of months since I last updated. Here is the latest.

Incontinence - I went padless for the first time on January 13th exactly two months after removal of the catheter. While I would have a few drops of leakage it was good to be out of the pads. Around the first of March I began to have some perineum aching again and then started leaking enough that I had to go back to using one pad a day. This was depressing but I did not call my surgeon as I wanted to see what was going to happen. The aching continued for about two weeks along with the leaking. I guess things were still working themselves out there in the area where the prostate was located. The one day the aching stopped and so did the leaking. I had started back on kegels so that may have had something to do with it as I had stopped doing them after getting out of pads the first time. Now I am fully continent with not even a few drops when I sneeze or strain doing something. I also can hold my urine for a long time as long as I could before the surgery. This I am v ery pleased at as I feel I am back to where I was prior to surgery.

Impotence - No luck in this area at all and what a frustration. I tried penile injection of Caverjet at the first of February and it caused be to have penile aching for three to four weeks after that. Then I got an outbreak of HSV II which caused a few sores on my penis which were painful. It took another three weeks to get over that. I have since received Bimix for injection which does not have the same medication in it as Caverjet. I have not worked up the nerve to try that but will shortly. The vacuum pump has just not produced an erection that is satisfactory and while my wife and I have had sex using it it just does not satisfy either one of us so we have slipped into a period of little sex in the last couple of months. We have committed to renew our effort now that I am past all of my penile problems so we will see what happens.

I have my six months post op appointment in June and will update following it.

UPDATED

July 2007

I am now seven months post op and had my six month appointment with my urologist this week. As expected my PSA was undetectable. Given my post op path report which indicates all of the cancer was confined to the prostate my urologist expects all future PSA's to be undetectable. I will have another check in six months.

On the incontinence front I am totally dry even when stressing. I do leak a little when I have orgasms and my urologist told me that recent data indicates this is the case for about 40% of those that have a radical prostatectomy. He said that this will get better over time.

The ED is still with me. My urologist told me that it is still early to expect the return of erections. He was concerned that I had no response to stimulation even with the use of Viagra. I am using injections with Bimix which give me a good erection and my wife and I are enjoying the results. I hope that I do get the return of erections but at this point the injections are working well and I can live with the results although the spontaneity loss is missed.

I am still satisfied that the treatment I chose was the right one for me.

UPDATED

January 2008

This week went to my scheduled urologist appointment. Had a PSA check and it came back undetectable. I expected this result but I was still somewhat anxious to hear it.

Discussed with my urologist my ED status. In the last couple of months I have had some improvement in erections. I can get about a 50% erection with no assistance and about 70% with Viagra or Levitra. I shared with my urologist my concern that I have been told that whatever level of erections you have at 18 months that is about all you will get back. He discounted that and said that he has patients that continue to improve with erections for years after surgery. I asked about penile implants as I wanted to at least know about the next possible step if I do not get erections back. While injections work the lost of spontaneity has definitely impacted our attitude toward sex. My urologist said that he would not recommend penile implants unless there has been no improvement. He said that if I do not continue to improve or the injections do not work then he would recommend strongly the implants.

I would like to learn all I can about implants so if anyone reading this has any resources I can go to please let me know.

UPDATED

July 2008

Last week I went in for my scheduled year and a half post surgery appointment. My PSA continues to be undetectable as expected. My surgeon wnats to stay with six month followups.

We spent a lot of time discussing the ED problem. While I have had some improvement with the ED it is not where I would like for it to be and still cannot get an erection firm enough for penetration. I use Bimix injections combined with Levitra for intercourse. The problem is that before the PCa most of our sex life was spontaneous.

My surgeon said that he was not ready to recommend penile implants and I told him that I was not ready to go there yet. He did suggest that I give MUSE a try. I have used it once and it did give an erection firm enough for penetration but just barely. What it did do was give me a larger penis head then the injections do. The dosage he gave me was 500 mg which is middle of the range. He told me that if I did not have any problems with it he would prescribe a higher dosage. I am thinking about using two of the MUSE for a 1,000 mg dose. What I did not do the first time was combine the MUSE with Levitra. I will try that next and see what happens before doubling the dosage.

UPDATED

October 2009

I am approaching the three year mark since my prostatectomy. As my previous posts indicated I over came incontinence fairly quickly and I continue to be totally continent. My PSA tests have continued to be undetectable and I am now on annual checks.

The battle with ED has run the course through ED drugs, VED and injections. Injections work but our sex life has really taken a hit due to no spontaneity and the 3 to 4 hour erection. I have tried to decrease dosage to counter the length of time of the erection but it has little impact and the firmness drops off enough that the quality of the sex is impacted.

I have been studying penile implants for over a year and have decided to have one implanted. I have surgery scheduled for December. I am going back to where I had my prostatectomy for the implant. This is at Vanderbilt Medical Center in Nashville, TN, USA. Dr. Milam will be doing the surgery and he has done hundreds of them. I will be having the AMS 700 LGX implanted. I am not looking for increase in penile size just the return of being able to have sex when the mood strikes and not have to go through a several hour process. Dr. Milam did say I will have an increase in girth but not to expect anything in length.

Just wanted to share this and will update after the surgery.

UPDATED

February 2010

On December 17th I had am AMS 700 LGX penile implant installed by Dr. Doug Milam at Vanderbilt Medical Center in Nashville, TN. As I have committed I will share my experiences to date.

The penile implant surgery lasted about two and a half hours. I woke up from the anesthetic quickly and spent only about 45 minutes in recovery. The reason for the short stay was they did not tube me so pulminary function was not a concern and since I was going to be released early the next morning they kept me in one of the surgical holding rooms for the night. I did not have any pain right after the surgery and a cold pack was kept on my incision and penis. They let me eat solid food within 3 or 4 hours of surgery and even brought me a turkey sandwich around 1:00 Am when I was starving. The implant was left partially inflated to make sure the chambers healed with some expansion. I did have a catheter but it was removed around 5:00 AM the next morning and I was released around 8:00 AM.

I was told to keep the cold pack on until about 24 hours after surgery and then told it does not help much after that so I stop using it. The swelling started to kick in the afternoon after the surgery and with it came the pain. I started to take the pain medication. My instructions were to spend the first five days flat on my back as much as possible with my feet above my heart to help with the swelling. The second and third days post op were the toughest and I was taking the pain pills every four hours. On the fourth day I started cutting the pain pills in half and by the fifth I was only taking them at night. On the sixth day I attended the Christmas Eve service at my church and it was not too bad. Things got a lot better quickly and I was driving and going places by the 7th and 8th days.

I was also told to pull down on the pump in my scrotum as often as I could. At my two week post op appointment I was told the pump was in the right place and I could stop. By the 10th day post op all of the swelling was gone.

The inflated implant was about a 50% or better erection so I could not wear my stiffer jeans and had to wear my soft, relaxed fit ones. I eventually got use to the implant being inflated.

On February 10th my implant was activated. The PA deflated and inflated it once and I had to do it three times.

I am running out of space so I will provide and additional update.

Later: Continuing from my last update following the activation appointment for my penile implant my instructions were to inflate it a couple of times a day and hold it for a couple of minutes. I was told it would be painful for a while.

The first few days I inflated it I could only pump it about 9 or 10 times as the tenderness was too much to go beyond that amount. This gave a good erection in girth but you could tell there was some length yet to gain. After two weeks I can now pump it 20 times and now get good length.

I have used it a couple of times for sex and it feels real good. My wife says she is going to have to get used to it as the tips of the tubes are pointed and she can feel them. The only area I am still tender in when inflating is in the head of my penis. The tips of the tubes have a seam where they are joined to the straight part of the tubes and this area is harder then the rest of the tube. It is in this area where I am still in some pain when pumping up. I am pleased with my decision to have the implant. Now it is just my wife and I getting used to it.

One thing about it in the flaccid state I have good girth and length and reminds me of my younger days. There is no more turtle effect in the flaccid state.

Bill

UPDATED

March 2011

Currently I am about four and a half years past my prostatectomy. I have an annual PSA check done and it has remained undetectable since my surgery.

As my story states I regained continence fairly quickly after surgery and have had no issues with it since then. My penile implant continues to work well and I am pleased with it. The only disappointment I have is not gaining as much length with the implant as I thought I would. It provides functionality but my hopes to get back to close to where I was at with an erection before the PCa have not been met. But, it is better then using injections and does provide a better erection than the injections did.

I am sure those of you reading this story after being diagnosed would want to ask me if I would make the same choices today as I have done. The choice of surgery versus some form of radiation treatment I would still make simply because today I do not live with some dread of a rising PSA. That peace of mind is worth more than the lost of a naturally occurring erection.

UPDATED

April 2012

It has now been 5 years plus since my robotic prostatectomy and about 3 years since my penile implant surgery. My PSA continues to be undetectable and is now only being checked once every two years. My previous update provide the history of my journey including dealing with the impotency caused by the surgery. In reflecting back on the journey my one big disappointment was the lack of up front information provided by my surgeon as to the possibility of impotency from the robotic prostatectomy. One of the reasons I chose the robotic prostatectomy was the belief that it would provide a higher chance of nerve preservation. My surgeon quoted his percentages but what I did not get was how those were determined. I probably would still have chosen the robotic surgery even if I totally understood the chance of being impotent but I still would have liked to known all I could possibly known before making the decision. [A MiniPoll conducted two years ago showed a high percentage of men were not fully informed about consequences before choosing treatment]

As to the penile implant that was the right decision. Sexually life is good. Since the implant I have found my penis continues to get a larger erection as apparently pumping it up over time stretches it out. This is especially true for the girth as I am now larger in the girth than I was prior to prostate surgery. The only thing that I do not have anymore is a firm head on my penis but that has gotten better as the tubes have moved further up into the glands area over time.

For those starting to deal with prostate cancer there are a lot of resources on line than when I started dealing with it in 2006. This site and www.franktalk.org are the best I have found. Seek to understand all you can before making a decision.

UPDATED

November 2012

Today, November 1, 2012, is the sixth anniversary of my prostatectomy and I decided to update my story as a celebration. Life is good!! I am free of any cancer.

My penile implant is about three years old now and I continue to enjoy it. Over time my penis has responded to the pumping up of the implant. It has just been in the last six months that I can pump it up as much as possible and have no discomfort what so ever. It seems that there must have been some scar tissue or something that was giving me the discomfort at the tip of the right tube and that must have resolved itself as I now can pump as much as I can and getting a longer length and even some additional girth. I would estimate my length is now back to what it was prior to prostate surgery and I have more girth. My wife and I are frequently having sex and both of us are pleased.

To all my prostate cancer brothers out there my prayers are with you and I hope my story brings you hope and peace.

UPDATED

December 2013

I am responding to the request to update my story primarily for those who seek out information for those of us that are living without prostate cancer after treatment.

As of this date my status is the same as it has been for several years now. PSA's continue to be non detectable. The penile implant continues to function well with no issues. It has now been 7 years since my prostatectomy and about 4 since I had the penile implants. My overall health is excellent. I have lost about 30 pounds over the last year and a half which I have done by just cutting down on what I eat and continue to get daily exercise. I had a colonoscopy in 2012 which was clear and not scheduled for another one for 10 years.

I send greetings to all my brothers out there that have experienced PCa and wish them the best.

Bill Jordan

UPDATED

February 2015

I have been prompted to update my story and I appreciate being reminded. There is no change to my status since my last update. I continue to have undetectable PSA's. As to the penile implant I am still pleased. In fact I think it has gotten a little better over time. For several years after the implant I always felt like it was being restricted in length when I pumped it up as if scar tissue or something was causing it to be painful at maximum pump. In the last year it seems like it now goes further as if the restriction is not there anymore. I pump it now until I cannot pump it anymore and still do not have any pain. I have learned that I need to pump it in two stages. First I pump it up for about 10 or 12 pumps and wait about 10 minutes and than pump it all the way.

I hope all my brothers out there are doing well for those of you who are new to YANA my prayers are with you and hope my story provides help in your decision making.

Bill Jordan

UPDATED

March 2016

Once again I was prompted to update my story and again I appreciate it from those that keep the site up to date. No change in my status since last year. I have been contacted by two men this past year seeking information. They had both read my story on YANA. One was recently diagnosed with PCa and was weighing his options. He was leaning toward surgery and was willing to travel to have the surgery. He was interested in my experience with Vanderbilt Medical Center in Nashville, TN, USA. The other one was going to have an implant done and was interested in my experiences with my implant.

This coming November will mark my 10th year since having my surgery and my 7th one since the implant.

To all my PCa brothers out there may life be good to you.

Bill Jordan

UPDATED

April 2017

Once again the administrators of the site have asked me to update my story since it has been a year since the last one. All I can say is "Ditto" as there has been no change in my story. I was contacted by two men going through the decision stage on choice of treatment. Both were leaning toward surgery. I find it interesting the dialogue in the medical community about the use of PCA as a diagnostic tool. There seems to be more evidence that in men over 55 or 60 that PCA should not be used to determine the need for biopsy. There also, for the same age group, is a belief that for those with low to middle Gleason scores that watchful waiting is the best treatment plan. In reflection, if I had known that my tumor was a single one located almost in the middle of my prostate and with a Gleason of 6 I would not have had surgery.

Once again, to all my PCa brothers may life be good to you.

Bill Jordan

Bill's e-mail address is: jwj6872 AT aol.com (replace "AT" with "@")


RETURN TO INDEX : RETURN TO HOME PAGE LINKS