Ten years ago I started to have my PSA tested. It was between 1.0 and 1.1 for the first 5 years. Then it started to rise at a rate of 0.6 ng/ml/year with very little variation for the next 5 years. The doubling rate was constant at 2 years.
About 4 years ago I started to go to a urologist for a urine retention problem. He found a partial blockage but was reluctant to do any surgery at that time. It was not that serious but none of the drugs seemed to help much. Around 2007 he mentioned without alarm that my PSA had been rising at a constant rate but it was still within the normal range.
By the end of 2008 he said it was time to do a biopsy. The results were sent to Bostwick Laboratories (list price $2,000 for the reading and I believe, well worth it). They found that out of 10 cores, one had adenocarcinoma with a Gleason Sum of 3+3 involving 6% of the sample.
The doctor gave us the news with a lot of compassion and then suggested that we educate ourselves before making any decision. He suggested we read Walsh's book which we did. When pressed, he said he recommended Watchful Waiting.
Then we read Mark's book followed by Strum and Pogliano's book. This information was supplemented by many valuable web sites including Memorial Sloan-Kettering Cancer Center and UsToo. We also attended two UsToo meeting where were extremely valuable.
Given my age (58), fitness level, and staging, we decided to go with a radical prostatectomy contingent on the doctor agreeing with our reasoning. We ended up spending 30 minutes with the doctor as he answered our 32 questions and confirmed our logic. Our doctor uses the retropubic approach so that is what I will have.
The biggest surprise was that they were in no hurry to do the surgery. With the biopsy done in early January, surgery is scheduled for early June. In preparation for the surgery I have been building up my upper body, abs, and Keegeling. The added upper body strength was suggested by a friend that had the surgery last year. He said sitting up will be difficult at first and is best done with just the arms. I am building up my abs in the hope that these muscles will recover quicker if in good shape. During this surgery, the doctor will push the muscle bundles aside and not cut them. This will strain the muscles.
The Kegeling was suggested by a urologist at the Mayo Clinic who said it may help reduce the period of incontinence.
Even if all of this exercise do not help, at least I feel like I'm doing something to prepare. I plan to add to this text after surgery.
A few words about my doctor. He is a nerve sparing specialist and has done 2 to 3 prostatectomies a week for 20 years. In the last 2 years he has seen the number of surgeries fall as patients insist on the robotics surgery. He is now learning to do this surgery and had a few observations about both procedures. If you add up the lengths of all of those small incisions needed for the robotic surgery, they equal the length of the long incision needed for a retropubic prostatectomy. As mentioned before, during a retropubic prostatectomy, the muscles are pushed aside and are not cut. For the robotic surgery, holes are made through the muscles. There is also the issue of touch. With the retropubic prostatectomy, the doctor can feel the tissue as he/she proceeds. At the present time, the robot cannot transmit tactile signals back to the doctor. I understand that this will be fixed soon.
I work in the technology field yet was not impressed with the robot. My preference is for the doctor to have a clear view of the prostate and full tactile access to all tissue.
As I write this, we have 42 days until surgery. Life goes on. In 8 days I go on a cruise with my wife Donna, grand daughter (and her parents).
Throughout this ordeal, my wonderful wife has been there for me. We have been married 34 years and often finish each other's sentences. I've never had major surgery before but she has. Her support and insights have been a blessing.
It has now been 8 days since surgery and I am sitting at the computer without any problem. One thing I did not see in the many outstanding YANA entries was a detailed timetable of recovery so I thought I would provide one. I started taking notes as soon as I was discharged from the hospital. The pain meds must have affected my already poor short term memory so I'm glad I wrote this all down.
June 10, 09 at 8:30 AM we went into surgery with Dr. S. I was given a spinal block which was just a tiny needle stick for the local. I didn't feel the actual block. Surgery was Retropubic and lasted about 3.5 hours. The left side of my prostate had enlarged to where it was touching the nerves on that side so the surgeon took them too. Time will tell what that means. At 3:15 PM I was out of recovery and in my room. My catheter bag started out looking like it was filled with red wine but every day became lighter.
I was told that the spinal would work for at least another 12 hours. If necessary, I would get a pain shot. The nurse made it clear that if the pain started to rise, I should ask for a shot sooner than later. Once it hits a "10" it is hard to bring it back down. I'm no hero and promised to ask for a shot if the pain got much past a "2".
I was comfortable flat on my back for the next day. I moved my arms but that was all. My night consisted of wetting my lips with water, blowing into a machine that measured lung volume, and then waiting for 5 minutes to pass. I must have been very dulled out because this entertained me until morning. I probably dozed a little but mostly just rested.
June 11, 09 At 4:30 AM I received a pain shot. I was only at a "2" but that was the deal. I slept a little from the shot but was certainly not rested. Spent much of the day using water to wet my lips and keeping my lungs open.
Around 7:30 AM I asked to receive assistance walking. I swung my legs around and was sure I could feel the floor before trying to stand. Within a few seconds of standing I started to faint and had to sit down. I sat there for about 30 minutes and was then able to slowly stand. My wife, Donna, was now with me and we slowly walked about 15 feet. Just as I was about to go another 15 feet, she reminded me that this was a round trip excursion. I suddenly ran out of energy and felt a bit faint. Using the wall mounted rails, I was able to get back to my bed without falling. Close call. By the end of the day I was walking up and down the hall holding onto my IV poll with no mishaps. Some time during the day I received a second pain shot as I again hit a "2". Late in the day my bowels started to make "tones" and I was permitted to take crushed ice.
June 12, 09 I ate food for the first time since June 9 at 5:30 AM. The surgeon came in around 7 AM and removed my abdominal cavity drainage tube which is called a "JD". The tube is a very thin ribbon with holes in it. The tube attaches to a plastic squeeze bulb that is clear. Each time it was emptied over the last day the nurse would simply squeeze it to restore a slight vacuum. The removal consisted of a slight pinch and then it was out. The JD passed through what the doctor called a "stab wound". This wound was aligned to minimize the cutting of muscle. I continue to be amazed that I had an incision all the way through my skin to pass this tube yet when it was pulled out there was very little bleeding and no stitches or Steri Strips. After 8 days, I don't even have a gauze pad over it.
At around noon I was discharged after an orientation with Donna on home care. The nursing care at the hospital was first rate. I went with Dr. S because I trusted him and still feel that I made the right decision.
I left with a catheter attached to a leg bag. The bag was much longer than expected and hung below my shorts. I didn't mind but suspect a few hospital visitors might have been a bit put off. The 30 minute ride home was uneventful and pain free.
As mentioned before, I prepared for this surgery as if I was going to compete in an athletic contest. The rewards were many. My upper body strength was there for sitting up and getting around in the bathroom. My legs were strong enough to slowly lower myself as needed with no strain. I worked my hardest on my abs. The surgeon told me that when they cut me open, the anesthesiologist commented on how nice they looked.
The big payoff came during recovery. My abs "guarded" for about 2 solid days. In other words, they were tight for that long. On the third day they relaxed except if I started to cough or sneeze. Backing up the area with a small pillow really helps. The only problem I had was some soreness in my hips. We guessed that this was due to the muscles being pulled aside in order to gain access to my prostate. A few hours of ice packs on my hips and the soreness was gone.
June 13, 09 I took my first shower since June 10. I feel a pinch when I walk but it seems to be the drain tube slit and not the main incision. I am now aware of a sore throat which apparently came from my breathing tube during surgery. The nurse told me it would be gone in 3 to 5 days and was right on schedule. I started by walking 10 minutes every hour and added 5 minutes at a time. Got up to 30 minutes without any problem.
June 14, 09 Another long and sleepless night but plenty of rest and no pain.
June 15, 09 Good sleep from 9 PM to midnight and again from 2 AM until 5 AM.
June 16, 09 Almost every morning I find a tiny thread of blood in my catheter tube but otherwise all is clear. Sleeping continues to be a problem but then it was before surgery. I do get periodic bladder spasms. I always get them when I sit on the toilet and once when I just looked at the toilet. Once, a few days ago, things were aligned just wrong while sitting in my recliner and that spasm caused urine to flow around the catheter. I must have passed 4 table spoons and it sure was a surprise and mess. Now I sit on Chux pads.
June 17, 09 I took my first unassisted shower today. I now walk for 90 minutes at a time around the house. I've no interest in walking outside right now given that I prefer to stay with the large catheter bag which is hard to conceal. Best case, the catheter will be removed in 8 days.
The doctor wanted to leave it in so my bladder can return to normal size. For the last few years it was only emptying half way due to my enlarged prostate. If it must stay in then it must be doing some good. Except for the spasms, it sure is nice to have this catheter. I'm used to getting up every hour or so to empty my bladder. Now I can last all night even if I drink all the water I want.
June 18, 09 was able to write up these notes.
July 10, 09 Catheter came out. Once the retaining balloon was deflated of saline, the catheter almost fell out. No pain, just a slight amount of discomfort for a few seconds. I changed into Depends just to be safe but had no leakage. Over the span of the next week it was like an accelerated version of growing up. At first I would lose control just by seeing a toilet or hearing water. The next day I lost control while standing in front of a water fall. After that I experience just stress incontinence. That has gone from once a day to maybe a few drops every few days.
August 9, 09 We received our first post surgical PSA test and it was 0.1. This was the standard PSA test and not the ultra-sensitive one. It would have been nice to see 0.0 but this is still good news. As with pre-surgical PSA results, the trend is what we will watch.
The doctor warned that I may still need radiation but not at this time. My next PSA test is in 3 months. My incisions continues to heal nicely. The main incision is no longer tender and my stab wound, used to pass the drain tube, is almost gone. My Physical Therapist suggested I rub across the incisions after I take a shower. This breaks up scar tissue and promotes healing. It has worked very well.
I do have some tenderness deep inside which makes itself known when I wear tight pants or have a seatbelt on. I'm no longer on a weight restriction but am still careful not to pick up too much due to my shoulder (see below). I did cut the grass once but later felt some aching under the incision.
I wear a Playtex Maxi Pad every day but experience stress incontinence about every 3 or 4 days. My stream is about 4 times what it was before surgery, no more sudden urges to urinate, and my bladder capacity went from half to full. In this department, I couldn't be happier.
I use 50 mg Viagra to assist in my ED rehabilitation. Although not going as well as my recovery from incontinence, we are making progress. My insurance company only pays for 6 pills a month. These are 100 mg pills. The first time I took one I got a bad headache, an erection, but no orgasm. Since then I take only half of a pill which causes no headache, a erection good enough for penetration, and orgasm. Obviously, the monthly ration also goes twice as far.
I would say I'm almost recovered from the surgery if it was not for my shoulder. I damaged part of my rotator cuff by carrying the catheter collection bag around in a plastic pail. During those first few weeks of recovery, I was walking 90 minutes a day in the house and it took a while before I realized what it was doing to my shoulder. I then switched to hanging the bag from a strap which prevented any further damage.
I'm now in Physical Therapy 3 times a week and they expect to have me back to normal in a month. Until then, I can't use my left arm for much. I am fast walking on a treadmill 3 times a week for an hour. If this shoulder was not still healing, I would be taking back my lawn cutting and floor vacuuming chores. Hopefully that will be soon.
My Physical Therapist is an expert on rehabilitation after breast surgery. It has a some things in common with RP. Along with the advise about rubbing the scar, she explained that I should look for swelling in my left leg because some lymph nodes were removed from that side. I should also try to keep that leg straight when I sit.
My shoulder got worse and I ended up going to a specialist who diagnosed it as Frozen Shoulder. After a cortisone shot, I went for more PT. I now do 2.5 hours of stretching exercises each day. It has paid off and I have almost my full range of motion back.
The ED has gotten better and take Viagra every other time. My last PSA test came back less than 0.1 and my next test is not for 6 months. What more could I ask for?
I have been in remission for 21 months now. My PSA remains less than 0.1. My next test is in five months. All continues to be well.
I have an app on my iPod Touch that counts the days since an event. I periodically notice how long I have been in remission not out of fear but out of thanks. Life is good!
My PSA was 0.10 after surgery and then was less than 0.1. The test after that was 0.10 and the doctor was mildly concerned that it might be a trend. This time the test came back less than 0.1 so we all could breath a sigh of relief.
Except for the stress related to these tests, my life is back to normal. Life is good!
As of today, it has been 1343 days of being in remission. The longer I go with an undetectable PSA reading, the smaller is the chance of the cancer returning. Yet these last 2 weeks waiting for the test results have been difficult. I had just a little bit harder time going to sleep and a little bit harder time concentrating. As always, the weight all lifts off when I get the wonderful news. [I wrote a short piece about this thirteen years ago - three years after my diagnosis - WITHOUT HOPE.]
Last check up was 2 weeks ago. Am still in remission.
I now see my urologist once a year.
No change in status.
Went to my urologist/surgeon last month. All is well.
This was the 9th year of having my PSA checked plus digital exam. All normal. Next year will be the last time I have to go back to my surgeon for followup.
After 10 years of having my PSA tested since surgery, my wonderful doctor declared me cured! May all that follow me on a similar journey have the same outcome.
All is well.
PSA continues to be < 0.2
Last year my PSA was 0.06 so this year's number is almost double, yet being so tiny, I'm not concerned. Of course, I'll be watching the number very closely next year.
No change. Still cancer free.
All is well. It doesn't get better than that!
Rick's e-mail address is: rgsparber AT aol.com (replace "AT" with "@")
