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Wayne S lives in New Jersey, USA. He was 59 when he was diagnosed in August, 2007. His initial PSA was 4.00 ng/ml, his Gleason Score was 7, and he was staged T1c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

Went for my annual physical in the spring and the PSA came back at 4.0 ng/ml. My GP again suggested that I see the Urologist.

Having worked for over 30 years in the chemical industry doing research, the medical department did annual physicals which included a DRE (Digital Rectal Examination) and complete blood work-up. With the exception of a couple of years when I first got retired, I have watched this carefully. My PSA was 0.94 in 1997 at the age of 49. 1.2 in '98, 1.9 in 2000, 2.4 in 2002, 3.7 in 2006 and 4.0 in 2007. Another reason to watch this is that my father and uncle both have had PCa. (My father's choice of treatment at the age of 79 was both seeds and external beam, and except for some minor incontinence he is doing well at 87 years old now)

My urologist did a DRE and found nothing but suggested another PSA test. This one came back at 3.9 but a "Free PSA" reading of 11%. So he suggested a biopsy which was carried out on July 31, 2007. During the biopsy, he mentioned that using the ultrasound, he saw no abnormalities. When he called me several days later with the results being positive, I went into a cold sweat. My wife and I went in to meet with him and he explained that the Gleason was a 7 but that a 3+4 was better than a 4+3. They found cancer in two of the eight samples, all on the right side at 20%. He did not tell us a stage (or at least I didn't hear one, that's why I had my wife along with me. She tells me she listens better than I do.)

My urologist is a surgeon but he told me of the many options for treatment. I initially told him surgery was out of the question, but I had to do more research. I started my research with Brachytherapy(since that's what my father had used) and it seemed that most of what I read was men older than I were opting for this treatment.

I went through the process of a CAT Scan and a Bone Scan and except for the arthritis in my joints, everything looked good.

I then decided to go back to my GP to get an unbiased opinion. His suggestion was this "you are still a young man with possibly 25-30 years to live. Why take a chance that after radiation therapy you don't get all the cancer. Get it taken out." He suggested Dr. Scardino at Memorial Sloan Kettering in NYC. With a warning that it would probably take several months to get on his schedule.
After weeks of reading everything I could, including Walsh's book, I am leaning toward Da Vinci robotic surgery. I have found a surgeon (Dr. Isaac Kim) at the Robert Wood Johnson Cancer Institute in New Brunswick. I am scheduled to meet with him on October 9th. They are getting the slides from the lab that did the initial biopsy results for re-evaluation. After this meeting with Dr. Kim, I will decide which procedure is going to be the best for me to get rid of this s**t that has invaded my body!

UPDATED

December 2007

Well, I'm writing this as I remember my thoughts and the things that took place in the past several weeks.

I am scheduled for my procedure (daVinci Robotic Assisted Laparoscopic Radical Prostatetectomy) on the Monday following the Thanksgiving Holiday. During my pre-op exam with the nurse, I'm told all the things that I have to do prior to going to the hospital. On Friday, I will get a call telling me exactly what time to report in the morning. I have asked to be the first of the day in order to get things over and not put my family through more hours of waiting for the outcome. The nurse gives me a list of instructions for the week prior to the procedure which says, among other things, No alcohol. When I protest, she says that some white wine for the holiday dinner is OK but no red.

On the day before, I have nothing but clear liquids. So, turkey broth for breakfast followed shortly after with a bottle of Magnesium Citrate to clean out the intestines. Lunch is more turkey broth followed by a wonderful dinner of turkey broth. Of course, I've spent most of the day back & forth to the bathroom to empty my bowels. Before going to bed I give myself a Fleets Enema to finish off the cleansing process and shave & shower. I also shaved the hair off my wrist where I know they will enjoy placing tape to hold in the IV for surgery (they always like to torture guys with hairy arms). I figure I'll be saved some misery later on by not having to get this tape off of a hairy body part.

Day of surgery:

My wife & I arise @ 4:15 AM and get off to the hospital. We are fortunate in that at this time of day it is only a 30 minute drive. We arrive in time for the 5:30 appointment and are put through the final steps of admitting. I am amazed by the number of people that are here this early in the morning. After changing into the required two hospital gowns & booties, I ask one of the nurses if this many people are normal. She says that they have 60 people to get ready for some type of surgery today. After being poked with needles and being asked some final questions to make sure that I am the correct person and the procedure that is being done to me, it's off to the operating room. I remember switching beds, looking around to see the daVinci console and all the equipment and staff before it's lights out at 7:45 am.

I awake in the recovery room in the usual post surgery fog and feel some pain in my stomach & a tube draped over my leg. It's 3:45 PM. I'm soon wheeled to my room where my wife meets me and as I slowly become aware of my surroundings realizing that it's much later than I expected. My wife tells me that it took two hours longer than normal for two reasons, a) there was a major artery running along side the prostate and b) that I have a very narrow and deep pelvis which made the reconnection of the urethra a more difficult procedure. But every thing came out fine and both nerve bundles were intact as well as everything else looking good that was left inside. I'm able to have some Jell-O and an Ice Pop before trying to go to sleep for the night, which seems to last for ever.

Day One Post Surgery:

I am still on a liquid diet and again have some soup and Jell-O for breakfast. I made the mistake of going 10 hours without any pain meds. Don't do this, it's harder to catch up than to maintain when it comes to managing the pain. My doctor, Dr. Isaac Kim, stops in to see me and talk about the operation, giving me specific instructions for the days to come. I am fortunate to have a "Student Nurse" assigned to me for the morning and she helps me get washed up and do some laps around the floor. At 12 noon, they take a final blood sample to check for hemoglobin levels. While waiting for the results I have lunch. This is the first solid food since Saturday evening. Shortly after 1 PM we are told that I have been released to go home. I get the instructions on medications and the care & use of the Foley Catheter and it's out the door. Sitting in the car seat isn't very comfortable but thankfully it's a short ride home.

Day Two Post Surgery:

Last night was another long one. Although I do not have a fever, my body must be producing a tremendous amount of heat. I had to get up several times during the night to dry off as I am sweating a tremendous amount. The sheets of the bed are soaked through. After breakfast I start to get into the procedure of changing cath bags from the night bag to the leg bag (what a nuisance). I'm generally a pretty active person, so getting used to just sitting around is going to be hard. I do a lot of walking around the house and up & down the stairs during the course of the day. I still have no bowel movements even though it feels like I have to go from both ends.

Days Three to Seven Post Surgery:

Well, things are starting to get back towards normal. I am eating normal meals and having normal bowel movements. I have started walking twice a day for 45 minutes at a very brisk pace. I raked some leaves in the yard on day seven and while I did feel some slight pull in the stomach, I didn't over do the stress by trying to pull all of them to the road for collection. I have rediscovered many things about the neighborhood that I have lived in for the last 27 years.

Day Eight Post Surgery:

Today is my appointment with the Urologist for follow-up. The Catheter is supposed to come out this afternoon. I can't wait to get this bag off my leg and feel halfway normal again.

I am home again and with good news. First, the catheter is out! The nurse inserted ~200 cc of saline into my bladder before pulling the catheter out. There was almost no feeling of the tube coming out. Then I had to discharge the saline into a container a little at a time. Stopping the flow and holding it for 10 sec. before continuing. This gets me used to controlling the flow. We went shopping on the way home and when I checked the pad later, there was only a slight drop on it. I remember that I had laughed at something my wife said in the store.

The second good news is that Dr. Kim gave me the result of the pathology report on my prostate after removal. Here they are; Gleason 3+3= 6, Stage T2c, Organ Contained and Negative Margins. Hoo-Ray! This sounds great! He looked at the incisions and said I should not do any heavy lifting for several weeks yet and then gave me a script for Viagra. I am to take 50 mg a day for the next month to get improved blood flow into the region. (The nurse says that these are not for sex, but she didn't say not to have sex!)

Day Nine Post Surgery:

So, at one week after surgery, here is the good news; I seem to be as cancer free as we can know at this point The catheter is out and I seem to be relatively continent I can drive again The six small incisions are healing well and although somewhat tender, I feel great!

Although I know that everyone's case and circumstances are different, I would highly recommend this procedure and this doctor - daVinci Robotic Surgery done by Dr. Isaac Kim @ NJ Cancer Institute in New Brunswick, NJ.

For those of you going through this tough decision process, feel free to contact me if you wish.

UPDATED

March 2008

Well, Good News/Bad News.

My first (3 month) PSA results came back as < 0.1 Undetectable. That's great! Hopefully that means Cancer Free!

Bad News...Still leaking. Doctor started me on Detrol LA to try & stop spasms that he claims are from the bladder. (I think they are muscle contractions in the pelvic floor) I usually use 1 pad a day after 3 months. Not a lot of leakage but enough to need a pad.

Also, no reaction on the ED front. Doc has me trying Levitra 3 times a week for a while. We'll see if this gets the sensation and the blood flow back to "Old Willy".

Next 3 months will give a better idea on how complete the recovery is going.

UPDATED

July 2008

Well, I'm at the the 8 month mark and things seem to be pretty good (all things considered). My last PSA reading was 0.1 (although this didn't say less than 0.1 like the first one, I have found that it is important to use the same lab each time so that they are using the same assay for testing).

I have finally gone from using pads to feminine panty liners to nothing at all. I still sometimes have a leak when I am bending over and putting stress on the bladder, but it is fairly infrequent.

On the ED issue, I routinely take either Levitra or L-Arginine to increase the NO2 in the blood. They both seem to do the same. With adequate and proper encouragement, I will become engorged but not stiff. I have learned with this disease, that everything takes time. I guess there was much more trama inside from the surgery than I felt and that everything has a longer healing time than what I feel on the outside.

UPDATED

May 2009

I am now about 18 months post surgery. My last 2 PSA readings have been 0.2. At 1 year I experimented with the PSA testing procedure. On the same day, I went for a routine physical where they drew blood and then went to 2 different labs for testing. Doc's office & lab results 0.16, Lab A- 0.17, and lab B- 0.2. Shows what different labs can get. Latest test from lab B was again 0.2.

When I questioned the Doctor, he explained that there is not a "dotted line" that says "Cut Here!" and that some prostate cells may still remain that will still produce PSA.

So aside from that concern, things are better I reported before. Incontinence leakage is minimal and mostly during unexpected muscle stress or arousal. It's a nuisance that I guess I will just have to get used to.

On the ED issue, things aren't too bad. Certainly different than pre surgery, but acceptable (without and chemical assistance) With the assistance of Levitra or Cialis, it's even better.

Time seems to be healing most things...as long as the PSA stays where it is.

UPDATED

October 2010

Well, it's now almost 3 years since my DaVinci surgery and life is pretty good.

I continue to have my PSA checked every six months and it remains at 0.20, the same as it has been since immediately post surgery. The only explanation from the Doctor is "there isn't a dotted line to cut on and as long as there are some "Prostate Cells" left, they will produce prostate specific antigen.

Some doctors and others have asked why I haven't gone for radiation treatment. The doctor and I both feel that as long as it remains the same, there is no need for it.

On the ED front, things are pretty much the same. They certainly aren't what they were when I was 35 or 53, but not too bad considering I'm now almost 63 and taking a minor amount of medication for blood pressure. My wife certainly wouldn't mind if it was not as good. The desire is as strong as ever. One thing I haven't had checked is Testosterone level, I have read that there can be an increase post surgery.

Remember.... stay positive, do a lot of research and keep up the good fight!

Prostate Cancer doesn't have to be a death sentence.

UPDATED

April 2012

In 2011 at my annual physical my PSA result was 0.3 . The doctor had no explanation for it going from 0.17 to 0.3 and with all that is being said lately with regard to the whole Prostate Cancer debate, he had nothing to advise me on.

This year again the PSA result was 0.3 and no other adverse conditions. So we are doing nothing at this point. I continue to have stress incontinence that would be a "Pain In The Ass" if it was in a different region. Unfortunately, I have learned to live with it and until it gets a lot worse, I don't plan on anything being done about it (At least I'm not drooling from the mouth yet too) (sic).

UPDATED

March 2013

Last test results were during a pre-surgical physical in preparation for Bilateral Total Knee Replacement. The results were 0.3 which is the same as it has been for the last two years. I am now 5 years since having my prostate removed via Da Vinci Robotic surgery.

UPDATED

May 2014

At my annual physical, PSA came back @ 0.3. The same reading as I have had for the past several years. I have had no other issues concerning my prostate or urinary tract. Having a double knee replacement in December and January has added to my physical woes and with allergies that cause me to cough routinely, my stress incontinence is somewhat worse. I have started to wear a male pant shield. This gets worse in the evening as the body gets tired. Even though my arthritus continues to get worse, I am living my life as actively as I would have had I not had these operations. I work with Habitat for Humanity two days a week building houses in our local town.

UPDATED

August 2015

It is now over 7 years since my operation to remove my prostate. Over the ensuing years, annual PSA checks yielded numbers of 0.17 thru 0.30. At my annual physical my doctors has said that they, the medical profession, are perplexed as to the relevancy of PSA numbers post surgical removal, especially when there are no further symptoms of the disease.

My personal story in the past few years is that other than the stress incontinence when sneezing or coughing, I have not seen any other issues related to Prostate Cancer. I have had three Total Knee Replacements in the past 2.5 years and with all the blood tests and other surgical testing going on we have not seen any evidence of continued prostate problems.

UPDATED

September 2016

Well folks, I am coming up on 10 years since total prostatectomy. There are several things to remind me of what happened those 10 years ago, several scars on my abdomen, no ejaculate when I orgasm and that ever present stress incontinence (damn leakage). Other than that life is pretty good in that get to grow older. Three total knee replacements and arthritis remind me that getting old is not for the weak. But....I get to grow older! We have moved to Delaware from New Jersey and built a new house big enough for my children's families to all visit at the same time. With 4 grand children and another on the way, life is good. And..... I get to grow older!

A new and somewhat welcome surprise on the ED front is that about 9 months ago I started to have nocturnal erections and "Morning Wood". I have been able to get erections right along since the operation, but this is new.

Wow! Did I say.....I GET TO GROW OLDER!!!!!

Wayne's e-mail address is: smithwcnj AT hotmail.com (replace "AT" with "@")


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