My Prostate Surgery Journal

Prostate Cancer - My Story

My name is Scott. I live on Long Island in New York. I am a 59 year-old white male 511 weighing in at 250 lbs. I found out that I have Prostate Cancer in early April of 2006 after a March 15th biopsy performed at Winthrop University Hospital in Mineola, NY.

My story begins in 1999 when I asked that PSA be added to one of the frequent blood tests I was taking to monitor my cholesterol. My PSA was 4.0 and remained that way for several years. My Internist detected nothing unusual in a DRE. In 2005 my PSA rose to 5.0 and three months later it was 5.5. At that time I was referred to an Urologist who performed an ultrasound after detecting an enlarged Prostate via a DRE. I had been experiencing symptoms of Benign Prostate Hyperplasia (BPH) with frequent urination. Testing revealed that I had bladder retention as well and I was placed on Flomax. I did have some relief from frequent urination, but I still was retaining urine in my bladder and this was a concern because of the danger of an infection. A biopsy was performed in the Urologists office, six cores were taken and all were negative.

In mid- 2005 I participated in an experimental study wherein Ditropan was added to the flomax in an effort to have Ditropan relabeled as being applicable to BPH symptoms. I do not know the result of the study, but it did not help me. I was given actual Ditropan, as there were no placebos used. I was then asked to participate in a blind study testing the efficacy of a light activated agent that would kill prostate tissue and reduce the size of the gland. I declined to participate because subjects could receive anywhere100% of the drug, 50%, 25% or nothing and I could not see my BPH as a really significant problem. If I had to urinate ten times a day I would urinate ten times a day. I was retired, so it wouldnt affect me too much.

Shortly thereafter my PSA rose to 7.0 followed a 6.0. We decided to do another biopsy, but use the hospital and do it under anesthesia. This time 20 sticks were taken and cancer was identified in less than 5% of the tissue in 2 out of the 20 cores. The pathologist graded the cancer as Gleason 3+3=6. This I later learned is considered a relatively low-grade cancer and this allowed me some time to explore my course of treatment. We followed this with an abdominal CAT scan and a bone scan that were both negative giving me a very high probability that the disease was organ contained. After breaking the news to me, I kind of expected it due to the rising PSA. My Urologist said that he really couldnt recommend one course of treatment over another. He noted that if I were younger he would push for surgery and if I were older radiation would be his recommendation. I recall him saying when he addressed the lasting efficacy of S.I., wed all like to live to be 90, but not too many of us make it He next explained open retro pubic prostectomy that he would perform and he explained seed implantation and we discussed external beam radiation briefly as he felt that seeds would be sufficient in my case. I asked about robotic procedures and he suggested that these were too new to be reliable in his opinion. He is a younger doctor and this surprised me.

We agreed that I had a while to decide and made an appointment for me to see a Radio Oncologist to discuss seed implantation (S.I.). Two weeks later I saw the Radio Oncologist and, after reviewing my pathology report as well as my CAT and bone scans he gave me a surprise DRE and assured me that he had every confidence that S.I. would be an excellent choice for me. He claimed a 98% success rate out to 16 years with 95% of patients suffering no side effects whatsoever. Well, I went home that day convinced that S.I was the way to go. Who needs to risk incontinence and impotence when an outpatient procedure is available that has such wonderful success rates? Not me, no way.

I then found Don Cooleys website and my knowledge level changed from being informed to being educated, and what a difference that is! (Click on Prostate-Help, Patients Helping Patients )

After doing my homework I asked a nurse friend of mine to find out who the best surgeon was in the area. She got me an appointment with a doctor who it turns out doesnt do many prostatectomies these days, but specializes in those patients who suffer from incontinence issues post treatment, both surgical or radiation. What he told me really rocked my happy little Im having S.I. world. He said that if I came to him with an incontinence or retention issue post radiation, any surgical remedy would be problematic. He noted a TURP after radiation could cause burning during urination and other surgical remedies such as an artificial sphincter implant present difficult healing challenges with radiated tissue. He told me that as I had BPH issues before treatment and if I underwent radiation it was most likely that I would have the same issues after treatment.

Back to the drawing board I went. More study and more study and more study. Frankly there did not seem to be a good choice out there for me and I was at a total loss. More and more e-mail comments appeared on Dons website describing complications from radiation and many outright failure were discussed. Maybe I had to bight the bullet and go under the knife and risk wearing a diaper the rest of my life. Could I live like that? Did I want to? I just didnt know.

I found a few websites that discussed robotically assisted surgery and claims were made of successes that equal conventional surgery with much lower incidents of side effects. I was able to watch a surgery at this website,

http://www.intuitivesurgical.com/corporate/newsroom/events/webcasts.aspx. (Click on Robotic Surgery )

I then made an appointment with Dr. Tewari, who is listed as an artist on Dons site. After considering my options I decided to have the robotic surgery at N.Y. Presbyterian

Hospital in Manhattan. I was surprised to learn that there were 75 patients ahead of me! Dr. Tewari wants his patients to get a pre-op physical and medical clearance from their own Internist and this surprised me as well. I was given a large folder with a description of the procedure as well as pre-op and post-op procedures. I had to return to the doctors office for an interview with the nurse. She took a history from me and reviewed my paperwork and made certain that I understood my pre-op preparation procedure. To my dismay, she also performed a surprise DRE! I was given all of my prescriptions and sent on my way with instruction to call the day before surgery in order to find out when I was expected. The pre-op preparation consist of drinking a bottle of citrate of magnesium the morning of the day before surgery, staying of clear fluids and Jell-O all day and performing a fleet enema between 6 and 8 PM. And the usual, nothing to eat or drink after midnight.

I hope that I have made the right decision and I am sure that I will have a different perspective after surgery depending on the success of my recovery and how I tolerate the procedure and resultant side effects. As humans we have the tendency to remember the good things in our past and forget the bad, and because of this I am writing this today. I am expected in the hospital at 6:30 tomorrow morning. I hope to continue this story when I return giving the reader a fresh perspective of my progress and impressions.

Made it back from surgery.

Went in at 6:30 am, everyone was exceedingly nice and helpful. Found out that the surgery was scheduled for 8:30 am. It took about an hour and a half to get me in a gown, run the IV, make sure that I had complied with the pre-surgical instructions and had my interview with the Nurse/Anesthesiologist. I walked myself to the operating room, which I found unusual and was interviewed by a nurse outside the door. I suppose she was making sure it was I before allowing me in there. Once inside I was shown around the room, introduced to those who would be assisting Dr. Tewari and asked to get on the table. I was told that I would be in the recovery room in about 4 hours and allowed visitors when I was fully awake. Next thing I recall was being in the recovery room.

There was some discomfort, but not too much and I was groggy as can be expected. The nursing staff was attentive to a fault and they made sure that I was comfortable. I was given Morphine until I reached a comfortable level and then allowed a maintenance dose every four hours. By 4:30 PM I was in my room and I was able to get myself off the gurney and into my bed with just a little help, and I found that an encouraging sign. By 5:30 PM my wife and the nurse had me walking around the floor and while it was slow going I managed to walk almost a mile with several breaks and one rest pause in bed. There were a few other IV pole walkers and we encouraged each other and it made the effort easier to bear. Dr. Tewari called my wife halfway through the procedure and advised that things were going well and he visited her after surgery and explained what was done. He checked in on me that evening and let me know that he had taken a few frozen sections during surgery and sent them to the lab and that there was a 90% probability that the cancer was organ contained and that I would not need any radiation as a follow-up. Members of this team saw me on half a dozen occasions and that made me feel better.

Besides the catheter I had a JP drain in my left side that I may or may not have to continue using at home, depending on how much is draining for the remainder of my stay. I had those leg compression devices placed on during surgery and they remained on throughout the night and found sleep difficult although I must have managed a few interrupted hours what with all the blood pressure tests and the like. I was administered an anti-inflammatory and several antibiotics on the surgical rehab floor.

Day two:

The next morning I was walking by 6AM, couldnt sleep much, and I managed to make 32 laps in all exceeding the required 25 by a fair margin. Of course the pain meds helped, and without them it is doubtful that I would have been able to do nearly as much. By Tuesday morning I was taking Todoral (anti-inflammatory) Vicodine, as I dont care for the offered Percoset or Tylenol w/Codeine. I found that the pain meds take the edge off just enough to allow me to do the necessary walking without too much pain.

I was released at 4:00pm after being checked a few more times, the drain was removed (thankfully) and I was given detailed discharge instructions by the nurse. I was allowed to walk out on my own and I arrived home about an hour and a half later. The car ride was OK, but I think it helped that my wife thought to bring a pillow for me to hold to my stomach in case I had to cough or when we rode over some bumps. After getting home I was pretty tired, pretty hungry and somewhat apprehensive. I was able to get used to the catheter and I tolerate it OK with the help of some lidocaine gel that was provided. I was able to pass gas and this allowed me to eat a scrambled egg and some chicken broth. Still no bowel movement and I will be on clears until I have one.

Day three:

This morning I took my anti-inflammatory and two Vicodine and we went to the beach where I was able to walk 2.5 miles in about an hour and a half. I was able to stop at a restroom every half hour or so to empty the leg drain bag and I found it fairly easy to manage. My wife cut down a pair of sweatpants just below the knee and no one can see the bag so I dont feel like I stand out.. After getting home I took a half hour nap! Now that I am awake I can write these recollections and say that so far things have been easier than I expected although I do not consider this a walk in the park just yet. I just got a call advising me that I have an appointment to return on the 26th for a cystogram where they will place a dye into my bladder through the catheter and x-ray me to be sure there are no leaks at the new connection and then the catheter will be removed. How I do after that remains to be seen. I am a bit disappointed with they delay in removing the catheter as I was originally told it would be in for only 4 days and now it will be 9 days.

Day Four:

I had some issues yesterday wherein I got myself worried about becoming constipated so I took two ducolax tablets. I was not eating much at all, mainly water, a little fruit juice and one egg cooked in chicken broth. For dinner yesterday I added a cup of applesauce and finally had a BM. Although it was more like diarrhea it did relieve my anxiety and the bloating in my stomach went down considerably. This morning I continued to have a loose stool with plenty of gas, but that's OK as I will add a small amount of food today with some egg drop soup and maybe a little pasta with a small amount of butter.

Even with the catheter in I still get the urge to urinate from time to time and I am able to constrict my urinary sphincter. I do not know if this is wise, but it seems involuntary to me and it often causes a little leaking around the catheter and penis. It was freaking me out, when my wife pointed out in the "after surgery" instructions that this was normal. I do not have too much discomfort, although I am sore throughout my lower abdomen. I was able to get in and out of bed much easier today than yesterday and that is a positive. I had been trying to stay off the Vicodine as much as possible because of the constipation so I did not take any other than in the morning yesterday before my walk. I am heading out for another 3-mile sprint (lol) soon and I decided to take the pain meds so that I am able to do the walking which I am told is more important.

All in all I wish I never had to do this, but so far it is better than I thought it would be. I know we humans tend to look on the bright side, but after passing a load of gas last night and some lose stool I lost not only gas and matter, but also a lot of anxiety now that I know my bowels are functioning, if not normally, at least they are working.

You know what all the "experts" say on Don's website about having an "Artist" perform the surgery? They may be right. I am exceeding my wife's expectations as regards my physical ability to stick to the rehab and I am not in good shape although I my history of walking 3 miles or so before the surgery probably helped with my fitness level.

Just got back from the boardwalk at the beach this morning and I was able to walk three miles in one hour and 10 minutes without really pushing it. Yesterday was a lot hotter, but it took an hour and a half to do 2.5 miles, Just an example of how much progress can be made day by day. I am being careful not to get too confident. I know that overdoing it could cause a real setback. We are all different, but it would seem, at least so far, that the robotic surgery option at least as done by Tewari, has been a lot less debilitating than I was led to believe would be the case with open surgery. Im drinking plenty of water and making lots of urine, the color was natural today for the first time since surgery, but became pinkish after walking and remains that way through the afternoon. One thing the walk and BM did for me is to give me back my appetite. I am eating lightly, but enjoying solid food for the first time since the surgery prep on Sunday. I am somewhat less tired, but would have continued my nap if the neighbor had not let his Schnauzer out in the yard! Oh well!

Just a note on the catheter and urine bags: I was given 5 leg bags and three over-night bags to take with me. You should also ask for the Velcro bandage that holds the catheter to your leg at the proper angle as this makes sleeping a lot easier. I have been drinking 12-16 cups of water a day from 24oz sport water bottles and I find that I have to empty the leg bag (holds about 900 CCs) every hour or so if I am sitting still and a lot more frequently when I am walking. I guess this proves the Dr.s point about walking being important to getting your plumbing back in working order. I was able to get a few more leg and overnight bags so I can change them daily. My wife took small wire rack from a toaster oven and wedged it between the mattress and box spring on my side of the bed and I am able to hang the overnight bag from this and it makes it easy to place it and remove it in the morning.

Day five:

I slept OK last night, but I am not much improved from yesterday. I am still sore from the incisions and tired. The weather is hot and humid and that may have an effect on my outlook. I was able to move my bowels again this morning in a more normal manner so I will expand my diet today. I took a half-mile walk and was quite tired. After a couple of hours of resting I went to the boardwalk and we were able to walk 2.5 miles in about 50 minutes in spite of the oppressive humidity so I guess my strength has not diminished. I must say that I feel much better after the walk than I did before so it must me very important to keep this up.

The only problem I notice today is a frequent urge to urinate that causes me some discomfort. It is worse while riding in the car, but I am figuring it has something to do with my posture in the seat and the way the catheter enters my body. When home I am able to place my left leg a little behind me when I sit and this seems to relieve any pressure on the catheter. I felt better after eating dinner so my tiredness may well be a function of the healing the exercise and the poor appetite.

Day six:

Woke up this morning feeling much better. I got a good nights sleep and I was able to get out bed much more easily than past days. I am even able to put my socks on myself! Walked on the boardwalk again this afternoon for 3 miles in 56 minutes. I pushed it a little too hard as my urine contained more blood that yesterday and a bit of dried blood as well. Next time I will take it easier.

Day seven:

Another good nights sleep, this time I recorded the nights urine output at 1600ml and I have no idea if this is good or bad. Amazing as it might seem I woke with the barest beginnings of an erection! No length to speak of, but there was a definite firmness to it. It did not last very long, but it buoyed my spirits. I decided that I would try the three mile walk today without any help form pain killers and I have to say that I was somewhat more sore during the walk, but still able to do the three miles in about an hour without pushing things, but I was certainly less comfortable. Hopefully I am off the Vicodine for good. As a note, since I have been home I have used the Vicodine only before the exercise walk as I feared it would be constipating. I think that not taking it did not cause me to restrict my movements.

Days seven and eight went OK, but I was getting tired of the catheter and it became irritating.

On day nine I had a cystogram at the hospital to check for leaks and none were found. Dr. Tewari removed the catheter which is painless and I just arrived home. My next step is learning to urinate once again and control my bladder. I was able to urinate a small amount as soon as I got home and although I am leaking urine a bit I understand that it will take a few week or months for things to return to normal. Most importantly the pathology report came back negative and I appear to be cancer free. I must follow up with a PSA test in six weeks. At this time I feel it was worth the discomfort and there was never any real pain.

Day ten was one of my worst days. I went to the boardwalk wearing a Depends pad in my underwear and I was absolutely soaked when after the 20-minute drive. I was so disheartened that I went home and put on a diaper as well as another pad and called a nurse friend of mine for guidance. I heard words like gross incontinence that did nothing to buoy my spirits. Fortunately, by the end of the evening I was able to control myself much better and felt considerably better.

Onward

I have improved daily. I am now 9 days post catheter removal and 18 days post surgery and I find that if I am sitting or lying down I have 80-90% control of my bladder. When I stand the challenge is to get to the toilet in time to keep from leaking, but some leaking is inevitable no matter what I do. At night I put on a diaper and a pad and find that I am almost completely dry throughout the night, but this includes waking up every two hours to urinate. My advice is to buy small quantities of different styles of Depends type undergarments and see which ones feel better and keep you drier.

I am getting better by the day and I am more used to the situation so it is less and less of problem. I have confidence that the incontinence issue will resolve sooner rather than later if I keep walking and doing the Kegel exercises.

As regards impotence. I am taking one half of a Viagra daily and I have felt some stirrings of sexual potency. My wife helps with personal training three or four times a week and, while I have not yet achieved a good erection I do get harder and the feelings are starting to return. This all takes time and I am patient. All in all the incontinence is more of a problem right now and I will be much happier to be able to concentrate on the impotence alone.

Progress! Saturday 19 days after surgery and, with the aid of my personal trainer spelled wife I achieved a pretty good erection and my first dry orgasm. Felt sort of strange, but I was very pleased. One more hurdle jumped. I am on ½ Viagra daily that (I take it at noon each day) and I suspect I will remain on it for up to a year as long as the insurance company continues to authorize 15 pills every 30 days. I continue to wake up several times each night to use the bathroom. However I am encouraged in that I am not wetting my diaper very much, which indicates to me that I am gaining more and more bladder control. Progress still needs to be made in controlling myself when I am walking, but yesterday was better than the day before, and as I get ready for todays walk I am encouraged.

That is where I stand at present. I will add to this journal as appropriate.

Scott

NOTE: This was taken from Scots BLOG on Augusdt 6, 2006. You can access by clicking on My Prostate Cancer Story