Reed’s prostate cancer journey process

One Man’s Journey Thru BPH and Prostate Cancer

Preface

First let me say that if you are fortunate enough to have a significant other to go through this with you, you are lucky, but you have doubled your issues because they all will affect her also.

I’m a 61-year-old man of reasonably good health. I have taken on this story because I could not find information about what I was going to go through before I made my decision to have a radical prostatectomy. Every doctor’s visit was a new journey, a new surprise, and a new person playing with my manhood, and a new emotion good and bad. While this is a very serious issue, I will try to add some humor to it. My wife and I had times when we thought we would die laughing. You have to have some humor about this to get through it. It isn’t easy. I decided to write this story about 9 weeks after my surgery.

I will endeavor to give you some references as we go and I hope that my journey will provide you with enough questions to ask, so you will be aware of what is next on your journey. No doctor will tell you what you are in for! They don’t know!

So this is my story, yours most likely will be very different. The decisions you make on this much-traveled road, by so many will have a great affect on you and your family!

Chapter 1

The Tests

Most of us who care about our health see our doctor regularly. I had a very good family doctor who took good care of me and pressed me to see an urologist to track my prostate health.  I tended at the age of 50 to be the guy in the pack who kept “going and going”. It seems like I had always been that guy, even from my teenage years.  Turns out I had the family bladder.  I had what we in my family called TB. When I told my doctor that I had TB, he said what does that have to do with urology. When I explained it meant “tiny bladder”, I thought he would loose it.  My TB now is the common term in his office for one of my problems.

I have BPH. I now knew this was one of my issues. My problem, even at 50, was I had Benign Prostatic Hyperplasia:

(http://kidney.niddk.nih.gov/kudiseases/pubs/prostateenlargement/) (http://www.johnshopkinshealthalerts.com/special_reports/prostate/bph_reg_landing.html?st=ppc&s=GLP_005018_003&gclid=COXIyL7ZzZICFQKhlgodJw91Iw).

Take the BPH test:

(http://www.uroxatral.com/consumer/about_bph/prostate_quiz.aspx), (http://www.healthscout.com/ency/68/169/main.html#DiagnosisofBenignProstaticHyperplasia).

There are literally thousands of sites you can review. There are several different tests, but all are similar.  A good self-BPH test is here:

(http://www.sevenhillsurology.com/bphtest.html)

I began to take many tests. The 1st at the Doctor’s office was the DRE “digital rectal exam”. The 1st time you have this procedure you instantly decide it makes no difference what disease you have, you won’t be back to see this guy.  Get use to it.  Two things for sure that will happen every visit to the urologist will be to pee in the cup and the digital rectal exam. But then if you are reading this you’ve probably already been there.

Then comes the PSA (prostate specific antigen) test. This is a blood test the doctors use to monitor your prostate for possible cancer.  At 50, mine was just below 1.0. When I made my decision to have my surgery it had gotten up to just over 2.2. Not necessarily a sign of trouble!

The Pills, My God the Pills

The pills! My God the Pills! The doctor suggested that I try some different options to keep my BPH problem down.  During my mid fifties I began to try the prostate shrinking drugs. The 1st one I took was Proscar. After about five months I gave up on this product. It really did not help, and my wife said she was about to kill me. I became emotional, put on weight (the Dr said that weight gain wasn’t a side effect). I began to grow boobs and my desire to have sex dropped dramatically.  I produced less semen when I did have sex.  In short that was not a drug for me.  I got off the Proscar and waited until my next urology appointment.  My visits were now every 6 months. My doctor suggested I try another drug to see if it would work. I wasn’t too enthusiastic about it, but I took the prescription for Flomax.  I waited about 2 months and then, because I was spending so much time in the bathroom, I decided to try the Flomax. I did not have the symptoms as bad with Flomax that I had with Proscar, however I got no relief. My sex life suffered severely. I pretty much lost all desire for sex. If it were not for my wife’s need and pursuit, I would not have had any sex at all! If I were to make one recommendation, I would tell anyone who had BPH to stay away from the drugs. I still have not completely recovered from those emotional changes. Some doctors will tell you that less than 1% of those taking the drugs are affected emotionally as I was experiencing. After surgery, sex issues are not easy, but with little to no desire to have sex to start with, in my opinion, it is much harder to return to the bedroom. The ED drugs (Viagra, Calais etc.) don’t work without the connection between your emotions and your erection systems!  More later on that!

When I got to 58 or 59 I decided things were getting out of hand.  I discussed with the Doctor other drug options.  We discussed Avadart as another option. My doctor suggested that it probably was not strong enough based on the other drugs I tried and suggested Uroxatral.  I tried this drug for about 3 months before I finally had to stop taking it.  I had completely lost all desire for intimacy much less sex. I began to have what my wife called “change of life sweats”(Menopause). I actually began to believe I was being turned into a woman going through the change. This was around my 60th birthday.  It was time to see my doctor again.

DRE time again. My doctor felt something on my prostate the last 4 or 5 visits that began to concern him. At this point I really had to do something about my BPH. I was in the bathroom hourly, day and night, sometimes more than that. I had to learn to sleep in 15 or 20-minute intervals. We began to discuss options, such as a transurethral bisection, basically a surgical ream job (http://www.cancerhelp.org.uk/help/default.asp?page=2873).  The more the discussions moved forward, the more the doctor began to be concerned about what he felt on my prostate. The doctor asked to do a biopsy.

The Biopsy

How is that done?  Ok guys, of all the stuff that has been done to me, this was the worst and if there was a way today to avoid this test, I would avoid it, at almost any cost. I would avoid it, not because of the pain or embarrassment of the procedure, but because I believe it is dangerous. Is it smart to drag a cancer cell out of your prostate, through several other parts of your body and through the wall of your colon? I’m not a doctor, but the logic here escapes me. Obviously until something else comes along, you have limited choices here! The short version is that the doctor sticks a machine up your rectum, and shoots a needle through your colon into your prostate.  This is done 12 times in most cases (that is 12 needles, that seems to be the norm from discussions I have had with other patients). The problem is the needle goes through the wall of your colon and then into your prostate. The needles are designed to pull a specimen from your prostate.  The doctors hope that they get enough flesh from your prostate to determine if you have a cancerous spot. If they miss the cancer, you may not know you have cancer until it is too late. The part I dislike is it only takes one cell, during this procedure to get out of your prostate and into your colon or someplace in between to get the cancer moving in your body.  There is a lot of research being done by several doctors on using forms of x-ray or CAT scan to accomplish the same thing.

I have an acquaintance whose cancer was encapsulated when it was removed, only to find that he still has cancer a little later. This could be from the biopsy or from the surgery? Who knows why, but why take the chance if there is another way!

Get A Second Opinion

Be sure to get more than one reading of your biopsy. The local lab said I did not have any cancer.  My doctor was seasoned enough to send my slides to Johns-Hopkins for a second opinion. When the report came back positive I then got a 3rd opinion.  Do not be bashful about asking for another opinion. You do not want to have your prostate removed for nothing.

Other Tests

During the course of this journey there were more tests. I’m not sure, which any particular patient would have, however I will discuss mine.  An awful lot of a man’s hesitation to see a doctor is no guy likes someone playing with his manhood. One test that is done is to look inside your bladder. A small tube is inserted in your penis that literally has a light on the end of it and allows the doctor to physically see if you have lesions or problems on the inside of your bladder.  I had no pain from this test.

Another test is the bladder size test.  This was a simple test; except of course if you have severe BPH.  Anyone who has severe BPH knows that if you hold your urine for any length of time when you need to go, you then can’t go and must dribble for 20 minutes or more in order to empty your bladder.  If you have severe BPH you know what I mean. Anyway the test!  Drink 4-12 OZ. bottles of water and be here at the office at 10:00.  You will then have a sonogram of your bladder taken, full and then empty.  They have a machine you pee into to calculate how much you pee and how fast.  I think the nurse knocked on the door 5 times to see if I was finished. I got so irritated that I said yes and then left. Unfortunately I had to find about 10 gas stations on my 5-mile trip back to the office.  No caring or understanding here on the part of the nurse. Seems to me there is a better way of accomplishing this test.

Chapter 2

The Hard Part

What Do I Do?

Now I have cancer. What am I going to do? Your emotions will now kick in! Start asking a lot of questions.  Some people told me my health was no one else’s business. “BULL SHIT”. Tell everyone you know what you have and ask him or her if they know anyone who could help you or has had the problem.  You will be surprised at what comes at you and the help you can get.  You will be amazed at the stories you will hear. Not everyone will be as open as you might like, however you will not know unless you ask. Everyone’s issues are different and what they need to get done is different.  It will make you less hesitant to go to the doctor to have these procedures done. Remember some experiences that others have had will be very bad. Understand you may talk to the guy who isn’t going to survive the cancer. There are a lot of guys with our problems.  Don’t push; move on to someone who wants to tell his story.

This I believe should be the 1st research you do. I say this because if you haven’t been here before, you haven’t a clue what to ask or what to research. My 1st choice was look on the Internet. Google prostate cancer and BPH and read. There is probably enough information on the net for you to read the rest of your life and never get to a decision about what you are going to do.  Have your prostate removed, take drugs, wait and watch, have seeds implanted, homeopathic, radiation and probably any one of a dozen other options. I am sure all of them have their good and bad issues.  I will speak further on mine, as it is the after effects of removal that I am dealing with now. It is a difficult decision because you will be overwhelmed with the fact that you have cancer. The unknown is really what you are about to experience! Unfortunately no one can tell you what you are in for nor are they willing to even give you an idea of what you are going to go through!

I was somewhat fortunate, if that can be. I had little choice. I could have had a TURP http://men.webmd.com/prostate-enlargement-bph/transurethral-resection-of-the-prostate-turp-for-benign-prostatic-hyperplasia and then have radiant seeds implanted or any one of a number of other responses to the cancer.  The issue was simple, I would have to recover from the TURP about 6 to 10 months and then have seeds implanted. This could possibly a 12-month to forever problem.  The issue after all was said and done and the TURP surgery was complete, I still had cancer! I was told the radical prostatectomy should take 8 to 10 months to recover from, and I should be cancer free. My doctor seemed to believe that I was strong, resilient and should not have problems with incontinence and that my ability to have erections would return. I did not like the idea of radiation therapy by seeds or direct radiation. I did not want my colon suffering years from now with possible cancer caused by the radiation. I did not want any rectal problems from radiation. I felt like I would merely be taking a side step.  Several of the men I spoke with who had seeds implanted had infections on a regular basis. I did not ask why! I wanted this to be over and other courses of action seemed to be longer and less likely to end the cancer, or cause other issues in my body.

It is said that prostate cancer is slow growing and that some should take a “wait and see” attitude.  Clearly having a biopsy every year would be risky and stupid in my opinion. Watching your PSA for movement didn’t make sense. Research seems to be unproven as to what the PSA test really says. Too many people I have spoken with have had the cancer and no high PSA. Several have had high PSAs and still no signs of cancer. It isn’t a perfect world.  The chairman of the board of my bank was diagnosed with prostate cancer. He was 81.  The doctors told him he would die of something else because prostate cancer was slow growing. 18 months later he was dead because of massive cancer from the prostate. I have had several friends die of this disease. It is not a pleasant way to go. One was in such horrible pain; he shot himself to get it over with. At 61 years old I wanted the cancer out of my body. I wonder why?

I need to tell more stories. Telling people what to do isn’t as good as stories.

The Hard Part Number 2

Who Is Going To Do The Surgery?

Who will perform this surgery?  Big question. What hospital? What doctor? Are they the best in the world? Get back on the street and talk to people who have had the surgery. Maybe there is a support group in the area.  Again I was fortunate. The doctor caring for me suggested one of his partners.  I asked him why he would not do the surgery. His comment “I only know how to do it the old way”. Now my doctor was only in his mid forties.  He said he was out of touch with the new ways of doing this type of surgery and willing to admit it. He recommended robotic surgery. 

OK back to Google.  Robotic surgery is just that, a robot guided by the surgeon does the work (you want one good at games).  What makes this better?  Several things. Less blood, small holes, BIGGER EYES, and several more things I’m sure. The surgeon even with the best of magnifiers cannot see as well as the robot.  You have far better chances of not having ED and the incontinent issues if the doctor can miss certain nerves and muscles that he may not be able to see by eye and glass alone.

I interviewed my doctor’s partner. My wife, my brother (a hospital administrator by trade), and I spent 3 days writing down questions to ask the doctor. When he entered the room he introduced himself and asked us to hold our questions for now. He seemed a mid thirties to forties guy and studious, very soft-spoken. I could tell by looking at him that this was his passion in life. Dr Carey was 1st a PhD Graduate from MIT.  He then received his medical degree from MIT.  The robot was his passion and he was deeply involved in its operation and in teaching others. He had a great bedside manner. He was humorous! When he finished introducing himself and talking about the surgery, he had answered every question we had on our list and then some, all without us asking the 1st question. I knew he knew what he was doing. I hope all of your decisions go as easily as mine. We spoke to several others, but none had Dr Carey’s credentials nor did the others give me that good personal good gut feeling. I put my life in his hands. I would add here that he did not answer the questions I didn’t know to ask! Mostly post surgery questions and what I would go through. No one has explained the emotional issues I’m going thru, or the ones I haven’t felt yet! I’m sure these questions would be difficult to ask or answer because we all feel so differently about our bodies and our life styles. I’m sure I haven’t felt several emotions yet that I’m bound to go through. Doctor Carey did stress that getting me cancer free was the number one important issue!

Unfortunately he did not tell me the things that would have made me feel better i.e. knowing what I was about to go through and what to expect. Please ask your Doctor to tell you in detail what will be happening to you. If you know, you will not be so hesitant to do what you don’t want to do. I have had several friends ask me if the doctor had been totally up front, and if I knew then what I know now, would I still have gone through the surgery. I don’t know that answer to that question, but clearly that should be my choice, not anyone else’s!

My emotions will now run wild. I’ve made my decision; I’m going to have my prostate removed. I made a small emotional mistake at this point.  I made the decision to have my surgery in 3 months.  While I used this time to put my life and businesses in order, I also used this time to try to out think myself.  It was rough to open my eyes every morning and think about what was in front of me. I needed the time for business and I probably needed the time to be sure my decision was correct, but it was a long 3 months!

I have cancer. What if I die on the operating table, how is my wife going to deal with this. Why me? Give it up! Because why that’s why! Pity pot. Boy for the next several months until you have your surgery, you will go nuts. This was probably the most emotional time I’ve had in my life.  My friends who have or had the cancer were my best support. While it was difficult for them to tell me what to expect, they all said it ain’t no big deal. Well guys, while your going through it, it sure seems like a big deal. As I write this, I’m going through it. It really isn’t a big deal, but there is something new every day. Maybe I haven’t hit the big deal yet.  Will I recover the sexual desires I’ve lost? Will I be able to have an erection? By the way the most painful day I had, was the biopsy.  So if you are past that, you should be past the worst physical issues, at least as I know it today.

The Surgery

I arrived at the hospital at 5:00 am. with my wife in tow.  We were able to get a private room. We were told that a public room might not allow my wife to spend the night.  She wanted to be with me constantly in case I had any issues. She wanted to be able to fight for me if need be. Again, I was lucky.  I picked a great doctor and a great hospital, Sarasota Memorial. Fortunately too, the hospital was not full. At eleven o’clock PM., my wife went home.

I went immediately to the preparation room, got stripped down, and shaved, washed and ready to roll. I took the “pill” to calm me down, although I had pretty well at this point determined that I had made the correct decision and was very ready.

My 1st wonder at the things people say came next. My doctor walked into the prep room and introduced me to the anesthesiologist. He said, “I brought you a healthy one, you shouldn’t have any problems with this one.”  Now laying on the table with a comment like that instantly said to me “OH”.  Fortunately I was out cold seconds later. I woke in recovery 3 hours later.  My doctor said I did well and should expect a good recovery! I felt good for a change.  I spent the night in the hospital with a catheter and intravenous bags feeding me saline and antibiotics.  I had regular meals.  At this point my BPH was gone. I got to sleep a whole night (catheter in). It was the 1st full nights sleep I had in probably 40 years.  I actually think the drugs had more to do with that than anything, but it was nice. I left the next day for home late in the afternoon. I got out of bed, after being taught about how to deal with my catheter   (it would be with me for 12 days), and walked out of the hospital.  My wife drove me home.

 

After the Surgery

I spent the next 12 days on my couch, getting up and walking as much as possible. I was in very good shape before surgery. I would find that the surgery was nearly a KO as far as my being in shape was concerned. The catheter became uncomfortable relatively soon (no pain, just a pain in the ass). I found that if I layed on my back on the couch and hung my leg up over the back of the couch I got some relief.  The greatest issue was the constant tingling in my penis.  I would call it a desire to pee.  It was very annoying.  The pains were called “bladder spasms” and I was told they would subside.  The doctor gave me drugs for that issue, but the spasms pretty much stuck with me.  After about 2 weeks they had subsided substantially.  To this day 11 weeks later, I still get a strange sensation in the end of my penis, and it is sensitive to the touch. These 12 days, on the couch, went slowly. I felt little if any pain from the surgery.  My biggest issue was being stiff from not moving my arthritic joints. Ultimately I did get up; put on the portable bag and got outside daily and even went out to dinner.

My 2nd wonder at the things people say came a couple of nights before I was to see the doctor again and have my catheter removed.  My lovely wife, who has incessant nightmares, had spoken to a friend whose brother had a bad experience from the removal his catheter after surgery. She told her the story about a nurse removing the “after surgery catheter” and causing some poor guy to go thru months more surgery because she pulled the man’s insides right out of his freshly reamed penis. Well if I’d had the strength to beat my wife at that point I would have.  I didn’t sleep for 2 days. What an image to have stuck in your mind.

The next morning I went to see the Doctor.  I stood on the end of the exam bed and was told to hold a bucket under my penis.  The doctor took the catheter in hand, pumped a pint of saline into my bladder and removed the catheter. I felt no pain at all. I also had the thrill of my life. Man I peed like I had a fire hose in hand. Having had BPH as bad as I did, it was one hell of a great feeling to pee like that.

My point, don’t let stories of others scare you.  On the other hand had some nurse walked in to do the same thing, I may well have just passed out with fear?  Pick your doctor and ask questions!

 

I found the surgery pretty well took everything out of me. I was a strong businessman, AAA type personality, who was running several businesses. I never believed anything could take all of my energy away. Ten weeks later I’m still exhausted. My doctor requires a one-hour fast walk every day. I’m physically beat when I get home.  Don’t expect to be out playing ball for a while.

You may not have a bowel movement for several days.  Mine came 4 days later after taking stool softener two times a day and drinking prune juice.  I learned to make prune juice a nightly drink.  I also learned that diarrhea would be part of my daily routine. 10 weeks later I have settled down to about where I was prior to surgery.

I will tell you that I still visit the bathroom a lot.  My doctor told me I have to retrain myself and over time my bladder will enlarge. He said I needed to learn to hold my pee as long as possible. This will help strengthen the muscles needed to hold your urine and at the same time, expand your bladder. This has been difficult to do.  When you are close to the bathroom, and have had a habit of spending your life in it, it is tough to stay out when you have the urge! I also find myself waking at night to use the bathroom.  I think my sleep habit is so ingrained in me that I wake from habit. I’m told will change.

 

Chapter 3

The Repercussions

Incontinence

There are clearly 2 issues with this surgery that are foremost in the mind of every man that must decide what to do about his problem. Incontinent and ED erectile dysfunction!

Everyone’s situation will be different. I had my wife go to Wal-Mart in advance of the removal of my catheter.  There are several types of pads and diapers for people with this problem.  After removal of the catheter you will learn what yours are. I found as long as I was sitting or lying on my back, I had no problem at all. When I stood to go the bathroom and did my best to hold my pee I could make it. However, I had little control when walking. As time went by I learned (earned) better control.  You should be given instruction on doing Kegel exercises.  DO THESE EXERCISES. In fact once you have decided to have this surgery start doing them with all the vigor you can muster.

(http://en.wikipedia.org/wiki/Kegel_exercise) or (http://www.kegelcompare.com/pelvexiserM.html) or (http://www.mwsexual.com/readingroom/articles/kegel-exercises.htm) After surgery I was told that my “Kegel” muscle was very strong.

I found within 3 weeks that I had gained enough control that I could get by with a “Depends” guards for men, regular. Within another 3 weeks I would occasionally drip. Unfortunately I found little advanced notice to try to stop the drip. When I twisted in my office chair, stood up or picked something up I would loose 2 or three drops of urine. 10 weeks later I still have that problem, but it too is becoming less frequent. Kegel, Kegel, Kegel!  Keep doing them.  I also found that if I didn’t do my walk daily, I would regress in the pee department.  Keep the faith and keep exercising! Another source for wet protection as you begin “final control”. http://www.timmmedical.com/cart/index.php?act=viewCat&catId=8

ED Erectile Dysfunction

Probably the greatest reason men shy away from a radical prostatectomy is permanent ED. Prior to my surgery I had no issue with the ability to have an erection. Had nothing to do with desire! My doctor told me that I should be able to recover from surgery and still be back to a condition similar to pre surgery.  Well let me tell you what you may experience.

My 1st visit to the doctor for my check up was 2 weeks after surgery. He checked the 6 holes in my stomach from the robot and we discussed how I was doing. The 2 issues being incontinence and ED.  Well to say that I had not had an erection was simple. No erection and no desire, and little emotion one way or another. The doctor said I would see you again in 3 weeks.  “Please get this prescription filled and bring it with you when you return”.  Also, please call Eric and make an appointment with him. He has a machine I want you to use.

I left the doctors office and went to the pharmacy to obtain the prescription. The prescription was for a bottle of material and syringes. Since we did not discuss this, my imagination ran wild for 3 weeks. I called and made an appointment with Eric for the same time I was to return to the doctor.  I was to learn how to use an ErecAid machine. Sounded like fun at first. Ouch! http://www.timmmedical.com/patients/

Time For Penis Rehabilitation

The removal of the prostate in just a few years past usually meant the removal of the nerves on the side of the prostate that controlled the brain telling the penis to enlarge.  Through robotic surgery and the surgeons ability to see better, the doctors can now, in most cases, preserve those nerves. However, the issue is the nerves still go through trauma. In order to work again they must be rehabilitated and retrained to tell your body to have an erection.

My appointment with Eric was interesting.  He showed my wife and I how to use the machine.  It is basically a tube you place over your penis. It is a vacuum pump. The suction in the tube causes blood to rush into your penis and give you an erection. I thought how wonderful!  I would get my machine in a week and my wife could get some satisfaction even if I couldn’t. Interestingly enough when reading the directions for the machine, I found that you could have an orgasm without an erection.  Well I have not gotten there yet, but one more exciting opportunity to come.

When my machine arrived, I found it nowhere near as much fun as I expected.  In fact it was “UNFUN” and quite painful at 1st. The suction on the tube puts a large amount of pressure on your body at the base of the penis.  I have to hold it off of my body with one hand, while I pump with the other hand. I have now used the pump for about a month. It hasn’t gotten any easier and is still painful to the body. I would tell you that I don’t believe I could use it with the band option to obtain an erection to have sex. http://www.timmmedical.com/

My next appointment was with the doctor. My wife and I were moved to another exam room and waited a few minutes for the doctor. Dr. Carey came into the room with his usual smiling face. The exam room was maybe 8’x8’. It had 2 chairs in it and an exam bed. The doctor asked me for my prescription and proceeded to put about 5micro liters of the drug I purchased into the syringe. He said stand at the end of the table and drop your drawers. I did as I was told. He grabbed my penis and said I want you to inject yourself here on the side of your penis. Not on the head or the top or bottom. He proceeded to give me my 1st injection.  With my wife’s eyes the size of baseballs, I got the surprise of my life. My wife later said if she could have jumped out of the room she would have. The injection didn’t hurt like I expected it to. In fact it wasn’t bad at all. I would have to learn to do this to myself.  My doctor did not believe in the drugs Viagra, Calais, or others until he tried the injection therapy.  He felt like the drugs were not controllable and why put them throughout your body when this worked better.

The doctor said you would have an erection by the time you get to the parking lot. He told me he would see me again in 5 weeks, and to have fun.  Holy shit! I had an erection. My wife and I where hysterical with laughter. I hadn’t made it to the elevator and I had one coming on. Unfortunately the doctor told me the 1st few could be painful.  Well through the tears of laughter I began to feel some real pain. I did not get what I would call a full erection although it was more than I’d had for 3 months. I was told to do this every 3 days to help retrain my penis.  Breakfast at the Village Inn was interesting to say the least. I could not sit still and repeatedly headed to the bathroom to allow my new erection some space.

Injection two.  I gave myself the 2nd prick 3 days later. Not a bad injection experience. Not a fun erection either.  If you can remember a piss hard hard on as a kid, and you can imagine anything twice as bad, that’s what I had. I was not fully erect either. Three days later I did the same thing.  Not as much pain, but I began to wonder if the emergency room was in order. Going on 3.5 hours later that little bugger was still standing up talking to me. As directed I took some Sudafed and the erection fell off. Interestingly enough I had used the same dosage of the drug as the 1st 2 injections.  So it is obvious that your body has different reactions to the drug possibly depending on your mood.

In the mean time I had to daily use the ErecAid machine.  I use this every morning in the shower just after I compete my daily Kegel exercises. This still is not fun by any means, but I am beginning to learn how to use the machine without being in great pain. You’ll need patience with this machine. Pump to fast, more pain. http://www.timmmedical.com/

Injection 4. http://www.ustoo.org/PDFs/Injection.pdf After reading up on penile injections, I determined that I needed to give myself the next injection on the left side of my penis. I’m extremely right handed.  I did not want to give myself “Peyronie’s Disease” curvature of the penis. I began a left side injection. I hit a vein or artery in my penis and it instantly swelled up at the injection location. I immediately withdrew the needle and proceeded to inject myself on the right side.  I determined the left side was going to require the help of my wife. My erection this night was not as painful as the last, so I knew things would be getting better.  I might add, I will be learning to use my left hand for injections!

The next morning I used the vacuum pump as usual and went to work. Around 10:00 AM. I had to pee. When I pulled baby out I thought I would faint.  One half of my penis was black and blue.  As if someone had drawn a straight line down the top and along the bottom. I mean black and blue! Obviously I had reopened the puncture in the vein using the pump and had sucked a lot of blood throughout one side of my penis.  I called the doctor and was told to stop all rehabilitation for 3 weeks.  Damn, just when I began to feel like I might have a real live tool again. 

2 weeks later I have returned to my rehab. My penis hides like a turtle. It never did that before my surgery! I don’t blame him considering all of the attention he’s getting. It is however very very annoying and uncomfortable. During the next Doctor visit, we discussed the problem.  Turns out I was told that my penis was actually shortened by about 1” because my prostate was actually deformed.  Removing that portion simply made the tube in the penis shorter and the foreskin was left the same.

I would add at this time that Johns-Hopkins spring Prostate Bulletin arrived at my home in late March of this year finally and deeply and directly addresses many after the surgery issues.  I highly suggest reading this report. It also describes a lot about what is going on with your body as you heal.

 

Chapter 4

Sex

Week 10. Sex! I haven’t got there yet! And I hope my penis doesn’t fall off from all the attention it is getting before I do get there.

Week 11

Next week is Doctor visit time again.  I will confirm at this time that sex is possible and you can have an orgasm without much of an erection and in fact it was a different kind of orgasm and a great one at that!!! On the other hand, maybe it was great because it was wwwwaaaaayyyy past due!

Weeks 12 thru 22 were all the same.

If there is another bridge for me to cross, I will let you know. If there is even better sex, then you’ve heard the last from me, maybe!

I still have no erection response at this time.  Since I was told that I would not see a natural erection for at least 6 to 18 months, I guess I can’t complain about that yet.  Have patience he says! Have patience! Damn I was hoping I would be the one to set the new worlds record for an early erection after surgery.

Chapter 5

Another Bridge To Cross

There is another bridge to cross. More on that in a few minutes!

I had my 6-month doctors appointment today August 4th.  I semi complained about the fact that the injection therapy I was taking was still very uncomfortable and I was not able to have sex with it.  My doctor changed my prescription to Trimix high dose.  I will shortly pass along its symptoms.  I need to finish up or use up the previous prescription material.  At $100.00 per dose, uncomfortable or not, I will use it up.  My main complaint with the 1st product alprostadil (also called prostaglandin E-1) was that I never got a full erection that allowed reasonable vaginal entry and it was very uncomfortable and painful which was not real conducive for a drive (desire) of any kind to do it again. All of the drugs are made in a “compounding“ pharmacy and must be kept refrigerated.  They are quite expensive, mine being $100.00 for a 10cc vile. I have not finished a vile before the materials went bad.  They are normally good for 4 to 5 weeks.

During my doctor appointment where I was given my 1st injection, I was warned not to over dose myself unless I wanted to find myself in the emergency room with an erection I could not get to go away.  One has a tendency to be over cautious about being too aggressive with the injection material.  I mean, can you imagine going to the emergency room with a large bulge in your shorts and be in pain on top of it all.  Can we help you sir?  I’m not sure after all that has been done to me if that embarrassment would be over the top!  My point here is this last visit I was told to keep upping the injection volumes until you get a satisfactory erection.  LOTS OF LUCK!!! Talk about being paranoid!

One good thing coming out of this doctor visit was that my PSA test report said my PSA was undetectable.  2 more times and I’m suppose to be cured, at least of the cancer!

Week 26

On to the next bridge, (urge incontinence) 3 months of weekly visits to have electric shock therapy      (better known as Neuromodulation therapy). As I mentioned earlier in my journal, part of my reasons for the surgery in the 1st place was severe BPH.  The main symptoms of which is “often” urination.  Removal of my prostate has not resolved that problem.  While I can empty a full bladder in just seconds, I still have the urge to pee as much as before surgery, and particularly at night. I have found that I awake with a need to urinate, even if I don’t really have to go that much.  My bladder after surgery was in fact 1/10th the size of a normal man’s bladder. My doctor says hold your pee and your bladder will expand. Try to go back to sleep when your body is telling you that you need to pee. I’m told I may have to live with that as my body adjusted to the issues at hand, and must now hopefully be retrained.

Neuromodulation therapy is simple and not really painful.  My 1st visit was with the nurse.  She had me remove my shoes.  She placed an electric wire pad on the bottom of the arch of my foot.  She also pushed a long needle (acupuncture type) into my ankle, which was also attached to a wire. That needle placement was not painful, but had very strange feeling. They are looking for a specific nerve in your leg that travels up your leg and somehow affects your bladder. She then turned on an electric current.  The sensation was similar to the chiropractors electric stimulator.  The power settings ran from 1 to 19.  I was told that I should have the nurse turn it up as high as I could stand the pain. I didn’t really have pain so much as a very strange sensation that was somewhat scary at 1st.  If I could stand the sensation for 5 to 10 seconds, it would go away.  The nurse told me that some people could never get past the 1st level and that some could go immediately to 19.  I made it to 14 about ½ way through the half hour session. I will have this done weekly for 12 weeks.  The doctor will make a determination if it is working, (seems to me I can make that one) if I need to continue, or if I can stop and maybe come back in the future.  One thing is for sure; I won’t miss the TV shows in the middle of the night if it works!

http://www.urotoday.com/browse_categories/overactive_bladder/sacral_neuromodulation_useful_for_refractory_urinary_urge_incontinence.html

http://www.neuromodulation.com/

Week 27

I haven’t seen any change after one session of the Neuromodulation therapy.  The doctor said I probably would not see much change until the 6th visit.  Today we got the power on the electrocution machine turned up to 18 out of 19. Interestingly enough I only hit the bathroom 3 times at work, in 6 hours.  Maybe I will get a full 2 hours of uninterrupted sleep tonight.

Week 30

 I have had my 5th session with Amanda. A very pleasant young LPN that makes the visits a little less medical and a little more a social occasion. It’s quite strange to talk about your peeing habits with a cute 26-year-old girl. I feel like I’m not getting up as much at night, but I have also tried to change my sleeping habits.  I’m trying to say up later at night. I’m also trying to avoid liquids after dinner. It seems to make me think I’m not getting up as much.  If I pee before I go to bed at 12:30 am after Leno (god help me when the red headed idiot takes over) and I get up 2 or 3 times at night just how much have I gone to the bathroom? Let me see 9:30 before I pass out on the couch, 11:30 before Leno comes on, again when Leno is over and 2 more times in the middle of the night is still 5 times a night normal.  I’m usually awake by 5:00 am. That is still averaging once every 1.4 hours.

I guess it is back to the “peepee” journal for me.

Week 31

I’m done with the 1st product alprostadil as an injection material for erections.  The pain was enough for me to throw out what was left.  It really was uncomfortable enough for me to say the hell with sex. I have picked up my new prescription and will try it next week.  I spoke to the Pharmacist that made my Trimix high dose.  He cautioned me again to start out slow and use only 10 micro litters the 1st time. I was also told that the Trimix includes a small amount of 1st product and that I should take 3 Motrin ½ hour prior to my injections. (Why no one told me this to start with I don’t know. He indicated it might have allowed me to use the 1st product with more success). The Motrin may also require an increase in the amount of injection material I use.  I would have to learn what worked.  This material should ultimately give me a “satisfactory” erection within 30 minutes that should last at least an hour.  He also commented that after the 1 hour that I should take Sudafed to help the erection go away.  Same story if you have it more than 4 hours, get to the hospital emergency room!

I would have to tell you that sex is getting very expensive. The 5cc vile was $180.00. Ouch! This product is supposed to last 8 weeks if properly refrigerated. I’m not so sure that the pain will be in my penis as much as my pocket.  I will let you know how I do!

Week 32

“Oh my God” as Chandler Bing  (Friends) would say. I injected myself with the new prescription Trimix High dose. I had one of the most unbelievable nights in recent memory.  After having dinner and just for a little emotional help I took 3 Motrin tablets and went about my business for the next 30 minutes. I then gave myself a right side injection of 10 micro liters and waited to see how my body would react.  The erection came on relatively quickly.  However as expected for the 1st injection with this new material I had a “soft” erection. This may have been because of the Motrin, however I had a little pain to begin with and then about ½ hour later more severe pain began to set in. Since this is supposed to be a training session for my penis, I put off the pain as best as possible and tried to read a book.  No possibility for sex. Within 1 hour I was beginning to get to a panic stage from the pain.  I immediately took 2 Sudafed to help the erection pass. Two hours later I took two more Sudafed and began to pack my crotch with ice. Now doctor’s orders, if your erection lasts more than 4 hours go to the emergency room.  With a “normal” full erection you could kind of fold up the old boy and zip up and move out.  Not with this erection. I seem to have the 1st ½ of my penis pretty erect. Almost like it was dug into my body and planted there.  There wasn’t any folding it into my shorts; the pain was way too much.  I actually had to hold it directly out in front of me in order to deal with the pain. Had I gone to the emergency room, it was going to be with my penis out of my shorts standing there for all to see with a cloth or something over it.  Why of course I was going to wear a jacket over my whole body at 90 degrees outside. I couldn’t imagine being pulled over by a cop at 1:30 in the morning and trying to explain my problem. I could neither stand the thought of this nor the pain of it all. I chose to stay home. By now it was 1:00 am 5 hours after injection and I still had most of my erection.  I could tell it was going down but very slowly. The pain subsided enough at 3:30 am that I finally fell asleep.  I woke at 7:00 on the couch to a bag of water and a very sore penis.  I still had a small erection but nothing that couldn’t be dealt with.

I went to the doctors for my Wednesday electrocution session and left a message with Dr. Carey’s nurse to have him call me.  “He’s in Ireland at the moment”. At this point I decided I was done with injection therapy.  Clearly what I was going thru was not worth whatever the outcome. My wife and I will have to look for other ways to deal with the loss of my ability to have an erection.

I have not yet tried any of the drugs such as Viagra. I presume that will be my next effort.  I’m not looking forward to it however as the injection therapy has clearly not given me reason to feel good about any of this.

Week 34

Yesterday was my last electric shock treatment.  I’m sorry to say after 12 weeks that it did not help me at all.  Next Monday I get to see the man again.  I will report what next wonderful thing I get to do to myself.

Meanwhile my ErecAid machine has died.  I’m sending it back for warranty replacement. I received my replacement in the mail in 4 days. The unit was under warranty.  So I am now back to the pump daily! I actually have had to return the pump twice for replacement.

Week 35

I visited with my friendly doctor again today.  After having left messages and calling in four times I got chastised for not using the injection therapy as I was directed to do.  “You must adjust the amount you use, but I want you to continue using the injections.”  The druggist suggested the normal injection amount would be 10 micro litters, suggesting that I should start off with 6 and work my way up.  6 ml was enough to send me to the moon with pain and the rest of the issues I had with the 7 to 8 hour erection. So I am now down to 2.5 to 3 ml and can take the issues without “great pain”, but continue to have 4 to 5 hour erections. I have been taking 2 Sudafed after the 1st hour and another 2 at the 3rd hour. I clearly get dry sinuses! I get an erection that is useless for sex, but I’m doing as I’m told.  I would clearly like to make this penis work again.

The good news was that my PSA again was not detectable.

Week 40

I have been continuing my injections as directed.  The holidays and guest have made it a little difficult to stay on schedule and a severe case of the flue has not helped any. I have found the injections a little less painful at this point, but clearly insufficient for sex of any kind. The erections are still lasting 4 hours to 7 hours, and I have not increased the amount I’m using.  If this is a gain, I suppose I’m grateful for the change! I have discussed the extreme length of the erections with the doctor and his comment was do not worry about it.  He should try an 87-hour painful erection and not worry about it!

 

 

Week 51

I have skipped to week 51 witch is my 1st anniversary of my surgery.  I had met with Dr. Carey this morning to update him on my progress.

Not much has changed in my daily routines with regard to the pump or injections.  I’m still using approximately 2 micro liters of tri mix and continuing to have 5 to 7 hour painful erections.  I have noticed however that my sword was beginning to look more like a saber. I have contracted “Peyronie’s Disease”. Fortunately it is not bad at this point and maybe will not worsen.  The part that made me cringe was the repair.  Dr. Carey indicated that they normally do not fix the issue until I may want to have a penile implant put into my body.  I clearly will be doing without sex before that happens.  I will be happy to find and hire a male hooker if my wife needs one.

The next issue was of course I would not be having injections any more. The good doctor has prescribed Viagra for me.  In the last month I have awaken with 2 half assed erection and have been given some hope that I may actually be able to have a normal erection again.

I complained to Dr. Carey that the length of my penis was decreasing as time went by. His response was very logical.  He showed me a picture of what my body (bladder, prostate and penis) looked like before surgery.  He then showed me a picture of my prostate that he removed form my body.  Mine was exceptionally large and deformed.  The prostate normally separates (is wrapped around) or is in between the penis and the bladder.  He basically removed 1” from that length of the whole penis by removing the prostate. I discussed in an earlier paragraph that I had a turtle dick.  This is what has caused that problem.  I can if need be have more foreskin removed which will help with viginal penetration.  Of course until there is no pain from an erection I will not be worrying about that issue.

I have not tried the Viagra yet.  That is scheduled for this weekend.  I was told 2 times a week minimum.  Another interesting issue came up at the Pharmacy.  Dr. Carey gave me a 10-pill prescription renewable 10 times.  When I picked up my prescription I was told my insurance company would not pay for their share because the prescription was over prescribed for the number of pills.  Evidently you are only allowed sex once a week as far as the insurance company was concerned.  If only I could have sex once a week I would be happy.  The tab was $170.00, and I thought the injection drug was expensive.  Now the insurance company didn’t even give me credit for the 4 pills they would normally allow. I will hopefully be getting a credit for some of my funds.

Well at this point I was now pissed off. I can’t have sex and trying to recover from a cancer surgery because some little peon at an insurance company tells me I’m not entitled to recover. Time to start making waves.  I have a very good insurance agent.  So after giving him the minute details of my issue and him calling the insurance company I fund I can get 5 bills a month for a $50.00 co pay. The remainder I will have to pay $17.00 per pill for.  The moral of the story is; be prepared, you are going to spend some money if you have this surgery.

I would add here that my PSA was again non detectable. At least I’m going to live!

More later about the Viagra weekend. 

ED Drugs

Viagra doesn’t work for me! Back to the doctors to see what else might work!

I now have samples of Levitra and Cialis to try. 

Neither of these products worked for me!

The remaining opportunity for my wife and I to have intercourse is to use the pump or have surgery again and have a penal implant placed inside my body so that I can pump myself up. Unfortunately that simply is not in the cards for me.  I have had enough of people in my body. 

Clearly the pump has been a daily ritual for me in the shower in order to help with the recovery of my penis.  It has not been a sexual regimen at all.  My wife and I must now try this machine.  Clearly our problem is getting past the very un-romantic part of the machine itself.  Gee sweet heart, now that we are ready let me get the machine out and see what we can do.  The use of the machine requires personal lubricant, which is necessary to create a seal around the base of your penis so that the pump has a vacuum and will draw blood into the penis.  Now I have a messy problem that creates another issue.

I have an appointment in another month to see what other options might be available. My research says that there aren’t other alternatives that I am willing to take at this time, but we shall see.  One thing is for sure, there always seems to be more to learn.

If you get to read my story, there will have been some prostate sites that truly want to educate people about this trip that no one wants to take.  I truly hope my journey helps someone make the right decision or at least ask the right questions. Had I known what my journey would be like, I clearly would have gone the other way and had a Transurethral Bisection done on my penis to repair my BPH, and then considered the cancer problem.  It seems that the word cancer brings to mind issues that are difficult to deal with and probably cause you to make emotional decision as opposed to educated decisions.  When you have had many friends of all ages die from prostate caner, your brain tells you to listen to your doctors and do what you can to eliminate the cancer.  That is truly the scary part. Evidence seems to be growing that everyone’s case is different and there doesn’t seem to be any real proof of how prostate cancer affects everyone. You have to take your chances. Hind site is 20/20.  I’m sure we might all do it differently.  All you can do is educate yourself and make the best of what knowledge you gain.

Epilogue

Several years ago my wife had an MRI done because of some sinus problems.  The doctors came back and told us she had pituitary cancer (same old story, one thing causes finding another!). Talk about having and emotional breakdown!  Every year we now go back and have all kinds of expensive tests to see if her cancer has grown. Is this cancer any different than prostate cancer?  Is it common?  The surgery to remove it 10 years ago was so severe that we were told to wait and watch. Now the surgery can be done with fewer traumas to the body, but is it necessary? We still watch and wait and hope for the best.  Maybe this was a lesson I should have learned.  Prostate cancer should be just as easily detectable in the prostate as on the pituitary gland.  Maybe some day science will find the ability to see this disease in your body and make it easier to make better decisions with less physical intrusion into your body.

I have not yet reached the end of my journey, but waiting to tell my story may not serve someone who needs know it now.

Good luck with your decisions on how to address the prostate cancer issues in your body. I hope my journey will help you at least understand what your journey may be like.

Sincerely,

Reed

Webcast

This is a webcast of a robotic prostate surgery:

http://www.or-live.com/StJoseph/1598/event/webcast.cfm

32 Replies to “Reed’s prostate cancer journey process”

  1. i hope all goes well for you and your wife my husband and i are going through the same thing as you, nothing seems to work for him either, he has had injections , and been on Cialis for 3 yrs and also has the pump, he had his prostate roboticaly removed 3 years ago aged 41

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  2. i’am just starting this journey with my husband and have read your story. my head is spinning. i know i will be making the decision for my husband. i handle everything in our family….but now i don’t know what to do. i wish my husband was stronger but he is so scare.

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  3. Thanks for the diary. Lot in common with me and other people I know. Had an open RP 6 mo ago, am going thru similar problem. I disagree with your conclusion that a transurethral bisection or wait-watch would’ve been better. At least you are cancer free now! Be great full.
    AF

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  4. Thanks also. I am 16 months post RP, and my wife and I have great intimacy in the bath or shower, but no intercourse. I am very lucky. We are happy to be together. Good luck.

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  5. Great Help, just had my prostate taken out June 13th 2013 at Hackensack University Hospital, It has been 13 days now. The small 5 holes have almost healed but talk about burning at the tip of the penis and a mussel in the rectum- wow! taking Hemorrhoidal cream, soft foods so far does not help but hopefully this will stop soon–marblman1@optonline.net—-thanks,Bob

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  6. 12 months this week since my RP. So far so good although ED is still with me but in the whole scheme of things I am so pleased that my 3 PSA readings have shown “undetectable” which is far more important than not getting an erection. The thinking in England is that 18 months is the minimum time before I can expect erection. I have tried both Viagra and Cialis and Viagra had no effect. Have also been given 2 pumps to try but the bands needed to maintain erection are somewhat painful. I do at least get pleasant tingling with Cialis and can reach a climax with a flaccid penis which is nice although not as strong as pre op. I was lucky to have a brilliant surgeon and urology nurses have been fantastic all free thanks to National Health Service.
    Thanks for your brilliant article it has brought back many memories.

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  7. i want to give thanks to the great doctor Lawrence who help me in getting back my ex-boyfriend i saw a testimony post by miss Kate from Spain about how the great doctor Lawrence had helped her, i decide to email him and to my greatest surprise my ex-boyfriend came back to me after three days of contacting him.i simply want to say thanks for what he had done for me and am so happy may he live long. if you have any problem just email him :drlawrencespelltemple@hotmail.com and you will not regret contacting him…

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  8. Thanks for the info,I too am graving problems with the erection problem,at the moment I am on testerone treatment and cialis,but at the moment no full erections as yet

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  9. Hey man,
    Your story is so touching and my heart goes out to you and your family and i pray you get better.
    i too am going through this pain staking stress of deciding surgery or tablets but both ways theres the impotence problems im only 52 and very afraid of surgery but docs advised for surgery. I wouldnt wish this prostate problem on anyone.
    good luck

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  10. Thank you for the opportunity to gain a deeply insightful, honest, and wholesome view into your personal journey with prostate cancer. On January 23, 2014 I had an RP using the DaVinci method/machine at North Shore University Hospital in Manhasset, NY (Long Island). While I’m optimistic and am willing to try different methods to counter my ED as you did, I don’t expect any miracles, especially because my cancer was so pervasive (8 Gleason score, PSA of 30, and all biopsy cores positive) that nerve sparing was not an option upon removal of the prostate. Like previously mentioned by another commentor; at least we’re alive to lament the interruption of a great sex life. And, who knows what may happen in the future if we stay positive? Good luck and continued good health to you – and more so – tons of good luck to your wife who stood by your side every step of the way. She’s a gem!

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  11. Thank you Reed,
    It will be eighteen months on April 2, 2014 since I had my RP performed at Columbia Presbyterian Hospital in NYC. Your story has given me heart and more than a few chuckles. ED is still an issue but incontinence is not. PSA tests over the past 18 months have been where they should be.
    Injections were never discussed and for that I am now grateful. I will bookmark your site. Wishing you and wife the very best of good health and positive spirit.
    With Gratitude for many things,
    Peter T

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  12. End of April will be 18 months since my RP on the UK. So many experiences since the day my wife and I were told of the big C and I can relate totally to the comments and humour of Reed and his brilliantly written journal.
    To all those who are in the same position I was in at the end of 2012 I say ” be strong, you will come through this”. We all experience that terror of what the future will hold but although having a major operation is never a pleasant experience I was so grateful that an operation was an option because for some cancers it is not an option as we all know only too well.
    My surgeon told me prior to my op that he is never satisfied with just removing the cancer and that it was his intention to return me as far as possible to the life I had before my op.
    Now almost 18 months later I can say that I am in very good health: I have lost weight and have completed many strenuous projects in the garden. I spent most of yesterday chain sawing and logging and on Saturday spent 7 hours moving heavy furniture from downstairs to upstairs. I say this not to boast but to reassure anyone who is about to have this surgery that there is a big light at the end of the tunnel.
    I still have ED but hey ho so what! I still have my lovely wife, my dog and my grandchildren and they are all far more important to me than having a fully operational penis. In any case who is to say that the ED will always be with me–I live in hope that one day soon the bulge in my trousers will be something other than my large set of keys.
    Good luck to you all and be positive.

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    1. Dear Mr Armstrong,
      I agree with you that a positive attitude is important
      Staying physically active as well
      I do a good hour plus yoga session three times a week run two or three miles three times a week lift weights
      Eat right with little animal fats
      Numerous supplants and vitamins round it all off
      Will it prevent the PCa from reoccurring?
      I don’t know but I am in great shape
      Perhaps better than ever except for ED
      With my Gleason score in the nine and ten range in the majority of samples I am grateful it had not spread
      My post op Psa count is negligible
      Did I make the right decision ?
      I don’t even go there I look ahead and thank the higher powers that be for each day I have, for each breathe I take . I don’t worry about choices I made yesterday just the choices I can make today to maintain good health
      Keep us posted ( I had two biopsies before making the ultimate DES idiom
      They felt like someone took a stapler to my prostate but the pain subsided
      The pain of the catheter was much worse but even that has faded from memory. Keep moving one foot in front of the other, don’t ask where I have been but if you want to know where I am headed I shall be glad to converse. This blog is truly a support network of men and their partners to share insight. Thank you one and all for the time you have put into it.
      Peter T, Ithaca NY

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  13. Like you I cherish every day. I have always been an anxious person and after my op my body quite naturally did not perform as I had been used to for the previous 64 years. This I found a worry as there is very little said post op ( in my experience) as to the changes which will happen as a result of having this operation.
    I am not blaming the medical staff because they cannot spend an hour with each patient explaining what those changes will be and inviting a question and answer session. However if I had been aware of some of the changes I would not have pestered my doctor so much. In the last 6 months I have had a back X Ray, an MRI scan and a colonoscopy and as they have all been negative I am now able to accept that the changes in the way I pee for example are as a result of the operation and not because I have any other problems in that area.
    The point of these comments is to reassure those who experience similar changes just to mention it to your surgeon/doctor for his or her opinion and ask for the various tests because I now feel so much happier in the knowledge that all the tests have been negative.
    One of the major problems I had experienced has been what can only be described as exploding bowels. From December 2012 , 6 weeks after my op I have had this problem and was told that it was as a result of the major operation and I was prepared to accept this opinion. I was going to the toilet perhaps 8 times a day and it was very difficult to do anything socially unless I was within yards of a toilet at any given time. In desperation I started taking 3 x doses of Immodium and then stop. This solved the problem for a few days at which time I would then go into constipation mode for a week to 10 days followed by the rumbling stomach mode which preceded the exploding bowels and diarrhea and the whole cycle would start again.
    It is for this reason I went to my surgeon and asked for an MRI scan and later because nothing was found a colonoscopy.
    At this point I would mention that I had been prescribed Cialis for the ED in December 2012. Prior to my colonoscopy 2 weeks ago I stopped taking the cialis and have not taken them since and lo and behold the exploding bowels have stopped. I should point out also that I have to take Lansoprozole for a hiatus hernia which I have continued to take.
    Now whether there is a connection between Cialis alone or when taken with Lansoprozole I do not know but I have an appointment with the Urology unit in 4 weeks and will ask them the question.
    I need to establish whether to restart the Cialis and suffer the consequences if indeed this is what has caused the exploding bowels. It is possible that the cleaning out of the bowels prior to the colonoscopy is responsible for my great improvement I do not know –I have an open mind but we shall see.
    I mention this only because this condition has been so detrimental to my everyday life for 15 months and it may help someone out there who is experiencing similar problems.

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      1. Radiation often times presents itself and its side effects years after the fact. This varies from person to person who have had radiation. Where a radical prostatectomy has its own issues, namely incontinence and impotence, diarrhea is more common with radiation and certainly a factor to consider in the decision making process. JM

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  14. Six months post op here. This is a devastating ordeal to have to go through. All I can say is that I think it is better than taking a chance of dying from cancer – still no guarantee of that of course. I knew before the procedure that nerve sparing was not an option in my case so I knew this was the end of ALL my sexual functions beforehand. Knowing that an experiencing that are two VERY different things! I still have the urge but have no way to satisfy that urge. Orgasms without ejaculation are frustrating and unsatisfying as much as they are just a flash in the pan type happening. Not worth the effort and letdown. After thinking I was so prepared for this, I am finding that I am not handling this well at all emotionally. I don’t feel whole anymore and NO, no one tells you your penis will be just a shy, limp, little nub after the surgery. They don’t even know why this happens they say. Oh yes, I went through all the other side effects also but this sexual part will hang over me the rest of my life. I am not talking against having the procedure but understand that no part of it is going to be positive. It can be the end of a part of yourself and your life that could be far more meaningful to you than you ever imagined. J. R. Minn.

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  15. I too had the op for prostrate cancer,I know that you can not ejeculation,but you have that same buzz as if you had,and also if the pills do not work,I.e an erection ,then you can gave injections to help you get an erection,so life can still be good
    Hugh

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  16. I’m not so sure that the biopsy device is inserted all the way to the colon….it would not be anywhere near the prostate gland…but why should I, a construction worker, second guess an educated urologist professional….sort of makes me doubt his so called credentials

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  17. What a great blog. Very detailed. I’m just starting this journey and so far it’s not much fun. Scheduled to have my catheter removed in two days. I will say the next time they put a catheter in me they will have to PAY me. I’ve never been more miserable in my entire life. The sphincter pain that goes to my penis while trying to have a bowel movement must be equivalent to having a baby. sitting on three cushion to control the pain you have in your ass—-priceless.I had to go marry a woman 12 years younger than me only to have prostate cancer wreck my lfe. Now I get to be all romantic by pumping it up??? It ought to be real interesting to see my life five years from now. Sorry about being a Debbie downer but it does help to get it off (pun intended)

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  18. Joe
    My story is similar to Reed’s but I had open surgery. The catheter was a real pain couldn’t barely sleep every time I moved the damn thing would cause so much pain if it got pulled I was going nuts. I had my surgery 2-1/2 yrs ago last check psa undetected. Good News!! Bad news no erections.

    Have taken pills, did the pump therapy, even with trimix its a chubby at best lately have seen it get semi rigid but barely useable. I thought when I decided to do the operation I would get thru this no problem and in a few months be back to at least near normal sexually. After all I had both hips replaced over 10 yrs ago at the same time and was back at work in 5 weeks I’m a good healer…right? Well let me tell you this is nothing like that.

    I didn’t really have any issue with incontinence but lack of drive and energy were noticeable. After a while I didn’t even think of sex much because I couldn’t do it anyway. But I kept trying I think I’m past the point of any hope of getting a full erection unless I put it in the freezer.

    But same as a bunch of guys here it sucks that we got it but at least for now and hopefully forever its gone.There’s a lot more to life and maybe one day while I’m enjoying that I may get the hard on that I miss so much!

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  19. I’m now 16 months post RP. I also was not told 100% of what happens along this bumpy road. I still have ED and a bit of In continence, I guess it’s better then having Cancer. Your journal is very familiar. When I see my Surgeon for followups he just says that I’m not alone. Be happy that your Cancer Free. OK! I’ll be that. Give me a call if you have to go through an experience like this.

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  20. I’m 3 weeks into my surgery and was searching for help on pain in back, groin, and left leg when i came up on your journey article. Your have opened my eyes to things I did not know. A urine test shows that I have an infection. Was put on antibiotic.
    Thank you for your great story. Wishing all the best for you all.

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  21. Reed,

    Thank you so very much for sharing your story.
    I diagnosed with prostrate cancer after my prostrate biopsy on April 10, 2015.
    My PSA count had gradually been climbing, my count prior to the biopsy was 6.6.
    Prior to the biopsy my Uroligist scheduled me for an MRI to avoid having to go through an unnecessary biopsy.
    I as told that no cancer was found on the right side of my prostrate but the left I had threes & fours which came to a Hleason score of 7.
    When I met with the Uroligist/Surgeon he asked me if I was ready to schedule the surgery to remove my prostrate on June 25, 2015.
    I keep wondering if I made a mistake.
    Struggling with incontinence, I down to one Depends men’s pads a day.
    I was prescribed Sildenafil for ED to no avail.
    My surgery was done via robotics which would spare nerve endings on the right side of the prostrate.
    I was promised a VED (Vacuum Erection Device) & I’m still waiting.
    I too have found that my penis has shrunk at least an inch, maybe more.

    Never did he suggest to wait & keep vigilant checking in the mean time.

    My PSA count has been 0.10 the last three times.

    Not happy about the results & there’s no going back.

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  22. Jeez I’m depressed just reading your story here’s mine I was struggling with a trapped nerve in my back and got rushed into accident and emergency . It was a week before the doctor came to see me and say d the nerve was trapped to deep to operate button we can give you a painkilling injection straight into the nerve. Anyway my wife said mention that your struggling to utinate. So I said to the doctor I’m finding it hard to pee is this because of the trapped nerve?.The doctor said no I will do a blood test and it came back my psa was slightly high at 2.8 and he said come back in two months for another blood test. Anyway on the second test my psa was 9.0 . I was then sent to see the oncologist who explained because of your age46 it’s unlikely you will have cancer but because of you urinary symptons we need to rule it out first by having a biopsy. In the day of the biopsy i was first to arrive but the last one in to have the scrape. They did six either side which was slightly uncomfortable but done quickly. Anyway the next day I went to pick my Mrs up from work but was feeling a bit unwell. I was running a temperature and driving back I started to shake vigorously. I managed to get iout of the car but cudnt turn the keys to turn it of so my wife had to do it. I went straight up stairs and was getting worse shortening of breath and hot and cold sweats.i told my wife ring an ambulance .when the ambulance came the paramedic said I had a temperature but was unsure what was wrong so they took me straight to accident and emergency my wife was there followed by my brother and my man. Anyway the nurse did the routine checks and said you have got sceptisemia blood poisoning. I spent the night on a drip and the next day theyvsaidvi was fine to go home . They gave me anti biotic a and for 4 weeks I was really ill hallucinations at night with hot and cold sweats and nauseous. I had to go back gps all though not in any fit state and he told me the anti biopics were to strong and took me of them. Then in the dsys to follow I had serious stomach ache and diohrea. The doctor said I had h pylori bacteria infection and when I did a urine sample I had a bad water infection as well. 2days later and my results from the biopsy were in so I went to see the specialist who apologised for the scepticimea but said there’s more bad news you have prostate cancer. Well my jaw dropped but he treasured me don’t worry it’s only low grade and we reccomend active watching . I said well thatsca relief and the Macmillan nurse said I will be in touch tommorow to chat with you. So me and the wife went home slightly relieved as this wasn’t bad right ?. Wrong the midwife didn’t ring so I phoned her and she said me Finnerty I need to see you so of we went to see her. On arrival she said we have had to re diagnose you as we found more cancer cells present on your biopsy than first thought so you now have a tc2 instead of a t1. I said can you explain so she said prostate cancer is graded in stage and letters t1 being the lowest but then it goes t1a t1b t1c then t2a t2b and t2c right up to t4 c which is when it’s left the prostate and spread to the bones . Yours is on the edge of the prostate so we recommend radical prostectemy robotic surgery ASAP. it was a further 3 weeks before I went for my operation but felt like months so many different things go through your mind . I was explained by the oncologist that I wud suffer Incontinence and erectile dysfunction for a short while after. On the day of the operation I arrived at 7am and was first one down they put you to sleep then you wake up on the ward thinking have I had it that was quick it was kind of surreal to say the least. I had a blood drain on my side and some over needles feeding me pain killers and a cafeta in. Within half an hour I was sat up having a cup of tea and a sandwich .i stayed in overnight then left with hardly any pain noticeable whatsoever. I was given 4 weeks blood thinning injections which I had to do daily. After a week I went for the cafeta to be removed and when the nurse took it out I peed quit badly and was told to put this pad on and was given a few weeks supply. For the first 3 or 4 weeks I was using 3- 4 pads a day and was given vial is for the erectile dysfunction . I’ve been doing Keegle exercises and had to re train my bladder stopping and starting mid flow which helps strengthen the muscle around the bladder. I’m now 9 weeks after the operation and leakage is minimal but no sign of any life down below. This really is a stressful time and it’s easy to get down as many men like myself don’t no what to exspect . I have since had a blood test which was below 0.1 and have seen the oncologist who told me there are no negative margins so the cancer is unlikely to come back . Wow what a relief I have to have psa checked yearly but this journey has been a roller coaster . I just wish there was a bigger push to promote prostate awareness the silent killer.

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  23. Had postate removed 14 months ago PSA undetectable no problem with incontinence never have to get up at night consider myself very lucky returned to work after 6 months work for local hospice ( Oakhaven hospice) had lots of support from work been there for last 21 years had robotic surgery at Bournemouth Hospital look after very well through out all my treatment enjoyed reading the above item as for the sex side not much luck my date of birth 12 8 49

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  24. Very glad to hear your cancer is gone just had surgery a week ago I will be 61 in 2 weeks .
    I am fortunate my oldest daughter is a pediatric oncologist and can help me reading the reports I understand what he’s going through the day before I went into surgery my mother was diagnosed with rectal cancer.
    Well it is difficult and having a partner help you is important.
    In my case I had no one at hospital he really wasn’t necessary and I prefer being alone my family came to visit for a bit and then left and pick me up the next day.

    I guess the main worry now is and certainly concern is whether or not my PSA will be 0 which really is the most important point after all the rest of the things downtown if you’re not here.
    There is one thing you forgot to mention I have never had drugs that alter you such as that dilaudid they gave me.
    I think the medication causes a lot of constipation.
    Ironically it does get rid of the pain but causes more agony trying to use a toilet.
    I guess everything is a trade off.
    But basically everything he has set up into the surgery has been quite accurate except that I was on actor surveillance for three years and many biopsies prior to my surgery.
    The 3 coil MRI highly specialized and rare to most hospitals still didn’t find the Legion fish jumped by PSA and Gleason score from 6 to 7.
    That’s what prompted me to have the surgery I’m hoping to do well as I have 2 weddings this year some in a few weeks for my daughters well it’ll be interesting good luck to everyone and I hope I hear when the battle here

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