Coping with Prostate Cancer
On August 30, 1999 I returned to my third, in a succession of urologists, to find out how he planned to treat a condition that is known as Prostatitis, only to be stunned with the news that one of the six biopsies that he had taken had been identified as containing cancer cells. Exactly one month later I spent my 60th birthday lying in a bed at M.D Anderson Cancer Treatment Center recovering from a procedure called Radical Prostatectomy. I am a lucky man because my cancer was discovered very early. Many of the relatives who waited in the MD Anderson surgical waiting room that day did not get the same positive results that my loved ones received. I am writing this paper to share the knowledge that I learned from this experience leading up to the day that I received that fateful news, the logic that I went through to make my treatment decision, but most importantly, to encourage people to take complete responsibility for their health.
My prostate problems began to appear about two years ago when my primary care physician sent me to a Urologist after an off and on appearance of white blood cells in my urine over a period of time and his detection of an enlarged Prostate. The Urologist conducted the fundamental DRE (Digital Rectal Exam) and went on to perform a cystoscopic examination and x-ray of the bladder. His conclusion was that I had a condition called Benign Prostate Hyperplasia (BPH), which is an enlarged Prostate. He prescribed a drug named Flomax which would help the urination process, and scheduled an appointment in the future.
Meanwhile, in early 1999 I had a regular physical from my Primary Care Physician, but they failed to order a PSA (Prostate Specific Antigen) test. When I discovered the omission, I immediately contacted the physician to request another blood sample to conduct the test. The results were a PSA of 3.9, which was .0.8 higher than my prior test, but still in the safe zone. Still in all it was a sufficient increase for my physician to suggest that I visit my urologist again. However, before I could see him I developed a sensation that I needed to urinate but could not. After a few calls to my urologist's on-call physician one Saturday night I made a late night visit to a local emergency room, where a catheter was inserted until I could see a physician several days later. At that visit the physician told me that my condition was caused by BPH and that I should have a Transurethral Resection (TURP) operation, which is frequently described as a Roto Rooter procedure. Not happy with that opinion I elected to visit another urologist that was recommended by a friend.
Upon visiting him my second Urologist, he conducted his own DRE with a little twist (but quite painful) of squeezing liquid out of the Prostate. His conclusion was that I had a condition called Prostatitis - which is a bacterial or not-bacterial related inflammation of the Prostate. He prescribed an antibiotic drug called Cipro. His first recommended dosage was double the drug manufacturer's suggest amount, but fortunately the druggist caught the error. In addition, he took me off the drug Flomax on behalf of a drug named Cardura that was developed as a treatment for high blood pressure, but had the side effect of addressing BPH problems.
For the next four months I had monthly visits with my new Urologist - each time enduring the painful Prostate squeeze (medically referred to as a massage) - but with no apparent improvement in my symptoms. During a visit in July, my Urologist said that he believed that my condition was caused by a disease called IC (Interstitial Cystitis) and he wanted to admit me to a local hospital and put me to sleep in order to conduct a test to confirm his suspicion. Several obvious mistakes that Urologist 2 had made during my visits with him convinced me that I did not want to be in an a defenseless state in his care. I knew that I needed to get to a Urologist in which I had confidence. Of course, the question is "How does one find such a person"? I am sure that in the city of Austin there in a well qualified Urologist in which I would be confident, but how would I find him/her.
After soliciting my Primary Care Physician, several doctors, that I knew and any number of men who had used Urologists I was no closer. Unfortunately, unlike baseball players doctors don't post their win/loss records on their door. Having lived in Rochester, Minnesota. I decided that a physician from the Mayo Clinic was going to be a cut above another random choice in Austin. I immediately made an appointment at the Mayo Clinic in Scottsdale, Arizona, but before I was scheduled to leave I spoke to a friend who had been to the Texas Medical Center in Houston. Within that umbrella organization is Methodist Hospital, which is affiliated with the Baylor College of Medicine and MD Anderson, which is affiliated with the University of Texas Medical School - both of these facilities contained world recognized Urology clinics. I therefore changed my plans to head for Houston instead of Scottsdale.
My physician at the Scott Department of Urology ordered the tests and directed the biopsy, which led to that fateful moment on 30th August when he gave me the news. My meeting with him that day was a blur. He told me that my cancer was rated a 6, on a Gleason score that ranged from 2 - 10, which means that it is mid-way in terms of being aggressive. He told me of its location within the biopsy (central right lobe) and that it was well differentiated. All of this was good news in terms of treatment. He sent me home with a video and a number of pamphlets that were designed to educate me on my condition. He also gave me a prescription for a bone scan and CT Scan, which I could have done in Austin. It was a long solemn drive back from Houston that day. When I got to Austin, I stopped at my office (IBM) to tell my manager, and then I made calls to all of my loved ones to break the news to them. The support that I received from all of them was great. My managers at IBM immediately took me off projects that I was assigned and told me to do whatever necessary to address my medical problems. For the next week, in addition to taking the additional tests, I became a voracious reader on subjects and materials related to my disease. The three basic alternatives (with a few variations) for treating Prostate Cancer are:
1. Watchful Waiting
3. Surgery to remove the Prostate
None of them are great solutions and they all have negative side effects, but they are pretty much it. Watch full waiting is primarily designed for someone who is likely to die of something else before the cancer (usually age related), and I never really considered it to be a viable alternative for myself. So the question that I had to deal with was whether to have radiation or surgery. My doctor said that he would be comfortable with either alternative, but that the decision was really up to me. A week later I drove back to Houston for s second appointment. This time I was armed with a tape recorder so that I would not miss anything that was said during our conversation. He seemed a little reticent about being recorded, but did not object. During this session he gave me additional bad news that the report on my CT Scan at shown some anomalies.
He did not believe that they were related to my cancer, but he wanted to have the film sent to his office for review. He asked if I had made a treatment decision. I told him that I wanted to visit a radiation clinic, for which I had scheduled an appointment later that day. I proceeded to go through a long list of questions that I had prepared, and then went to lunch prior to my appointment at the Baylor College of Medicine Radiology Clinic. During lunch I played back my tape and was somewhat disturbed that he made a statement that I did not have Prostatitis when he saw me, although it was cleared indicated on the biopsy report. I proceeded to the radiation clinic and met with Dr. Teh
The contrast between the two technologies was significant and surprising. In the urology area the physicians were stoic but fairly even handed when contrasting the two categories of treatment. At the radiation clinic the attitude was positive and upbeat. In fact statements were made along the lines that would never die from this disease. I left with renewed optimism and drove home trying to figure out how I would be able to visit their clinic once a day for the next seven weeks for 15 minutes of radiation treatment.
By the time I got home reality had set in and I decided to put together a matrix that would contrast the pluses and minuses associated with each type of treatment so that I could make a decision. Cancer treatment is largely governed by statistics. If you ask anyone in the field the likelihood of this or that occurrence, they will readily quote you the appropriate statistic. But as an individual everything that happens to me will be 100%. Thus the matrix does not contain the statistics that are associated with the indicated conditions, but it is my best estimate (based on my situation) on what will occur. The items are colored in green indicate which procedure has the advantage.
SURGERY < vs > RADIATION
Age - 59
PSA - 3.9
Gleason - 3 + 3 = 6
on 1 out of 6 core samples
Cancer return detection
Excellent - any PSA detectp>
Fair - significant PSA rise
Invasive surgery -
5 weeks recovery
7 weeks of daily dosage
Likely to some degree
Other Dr Preferences...
The Treatment Decision
As one can see, it was my conclusion that either treatment would be likely to address my cancer that had been detected in the very early stage. Thus my decision was largely based on the side effects that could/would occur with each type of treatment. Incontinence is one of the scariest prospects that most men associate with surgery. I concluded that if I had a good surgeon my good physical condition would address that problem. I also concluded that my preexisting conditions of enlarged Prostate and Prostatitis would best be addressed by surgery, and if I chose radiation I would still be faced with those problems. Another detraction of radiation is that if the cancer reappeared at a later date and surgery was necessary, I would likely be incontinent in the worst possible way. In fact I am personally aware of several cases where that had happened, and the men ended up wearing a catheter for the rest of their lives. Thus I concluded that for my situation surgery was my best alternative.
The Surgeon Decision
The next question that I had to answer was who was going to do it and where was it going to be done. After I returned to Austin I sent my x-ray film to Urologist 3's office so that he could investigate the anomalies that had been detected. He told me that it would only take him a couple of days to investigate, but it was only after a week and several calls to his office that he was able to give me the assurance that it was not a problem.
After a couple of days of more consternation I decided to get a second opinion from MD Anderson. I was able to do that quite easily by going to their Web site and registering myself. A day later they called me and told me that I had an appointment with Dr. Michael Chen for the following Monday. Meanwhile, while I was watching TV one night I saw in interview that was being held with a man who had sponsored a race for prostate cancer. After I discovered his name, I called him and he invited me to his office to discuss his experience with Prostate Cancer. He told me that he had gone though my very experience, investigated treatment all over the US and concluded that MD Anderson was the best place in the country to be treated. Furthermore he gave me the name of his surgeon, Andrew von Eschebach (who I later discovered to be world famous in the treatment of Prostate surgery and his quoted extensively in the October issue of Good Housekeeping Magazine), and offered to help arrange an appointment with him.
The conversation with him was really uplifting because he had gone though the surgery (a year earlier) that I had decided upon and was doing very well. Furthermore, he was in position to recommend an expert surgeon. The next day Dr. von Eschebach 's assistant contacted me to arrange an appointment. Due to his busy schedule it would be several weeks before I could see him. I told her to hold an appointment with him, but that I would go ahead with the earlier appointment with Dr. Chen. On Monday I arrived at MD Anderson for my appointment with Dr. Chen. My impression of MD Anderson was very positive and an improvement over my experience at the Scott Department of Urology . Before I went to MD Anderson some people asked me what I hoped to gain from a second opinion. I told them that I hoped that I would have a clear-cut opinion on whether I should have surgery there and who should be the surgeon. And that is exactly what happened. Armed with my tape recorder, I spent an hour with Dr. Chen going through the details of my condition. It wasn't long before I had made my decision that he should be my surgeon and MD Anderson was where I wanted the surgery to occur. During the course of our conversation, he told me that it was his policy to remove the nerves (key to whether impotence results) on the side of the Prostate containing the cancer. However, since in my case the cancer appeared to be locally confined he would be willing to conduct a nerve sparing procedure if I was willing to have additional biopsies taken along side the Prostate. I said that I definitely wanted to save the nerves, and so on the following day I went back to the clinic to endure four more biopsies.
The biopsy experience offered another example showing that even a facility as experienced and efficient as MD Anderson can make mistakes. The procedure was led by a visiting Urologist from Japan, and he was supported by a staff of three aides. Prior to starting the procedure he attempted to explain where the biopsies were to be taken, and asked for my signature on a form to show that I was in agreement. Although his English was not very good, I immediately determined that he was planning on taking the biopsies on the wrong side of my Prostate. My attempt to explain my concern immediately degraded into a an argument with neither of us wavering in our positions, until one of the staff members indicated that he would check with Dr. Chen. A few minutes later he returned with validation of my position. While I couldn't prove it, I felt that the Urologist's subsequent DRE, prior to the biopsy procedure was a little more aggressive than it would have been had we not had our argument.
Two days later Dr. Chen's nurse called me to tell me that the new biopsies were free of cancer, and the following Monday Dr. Chen called me and told me that he had an opening on the following Wednesday and one two weeks away. I opted for the close-in date, which was the day before my 60th birthday.
On Wednesday morning I reported to surgery reporting area at 6:30 in the morning, along with all of the other people who were scheduled to have surgery that morning. We were assigned beds in a screened holding area and provided with the requisite cap, gowns and elastic stockings (designed to prevent blood clots in the legs) where we awaited our assigned anesthesiologists. When my anesthesiologist arrived she attached an IV and said that she would give me something for my nerves, which were going wild. That was the last thing that I remembered until I woke up in a recovery area and saw a clock that said 4:30.
When I awoke, I immediately reached down to see if I was wearing a catheter (a tip I learned from William Martin's book ""My Prostate and Me"). Had I not had a catheter it would have indicated the analysis of the lymph glands, done at the first stage of the surgery, was not free of cancer cells, and they had therefore not removed my Prostate. So that was a positive sign. Later Dr. Chen came in and told me that the operation had been a success, but that one of my blood readings was showing some anomalies and he was going to keep me in the recovery room overnight. That night I drifted in and out of sleep, even with all of the medical monitoring devices attached to me. The next morning I was rolled into a regular hospital ward to being my recovery.
I consider recovery to be the time sequence that will get me back to my condition prior to the operation. In my case I viewed it as post surgery, continence (bladder control) and potency.
The direction that I received when I got situated in my hospital room was to walk to prevent blood clots and to use an inhaling device and to cough to keep my lungs clear. My first attempt at walking was a shock. Although 2 days earlier I had been running 3.5 miles every day, now I could barely walk 50 fifty feet without a lot of help. During my final two days in the hospital, remnants of my surgery (IV, drainage devices) were gradually taken away until it was just my catheter and me. On Saturday a nurse gave me a new overnight and portable drainage bag, and some instruction on how to keep everything hygienic and I was on my way. Since, I had an appointment with Dr. Chen on Monday to remove the staples that closed a wound that extended from my navel to my pubic bone, I elected to stay in a hotel that adjoined the hospital. That was a good decision because on Sunday I was so uncomfortable from constipation and swollen testicles that I went to the emergency room for help. They contacted Dr. Chen who ordered a laxative for my constipation, but discounted my testicular problem. The laxative was supposed to work within 6 hours, but it wasn't until one the next morning that I got my desired relief. In my own mind that was the point where my recovery began.
On Monday I reported to Dr. Chen's office to be examined and to have my staples removed. When Dr. Chen looked at my wound, you could see pride in his eyes. Although I was concerned about having the 15 or so staples removed, it was very painless. He told me to come back in two weeks so that they could x-ray the urethra/bladder connection, to insure that there was no leakage, and at that time he would remove the catheter. My time during the next two weeks was spent walking, sleeping and caring for my catheter and the drainage bags. I counted the nights that I would have to sleep with it Fourteen, ten, single digits, less than five and then I was done. I got someone to drive me to Houston that day, and reported to the x-ray area for a Cystogram. I was a little apprehensive about how they were going to do this leak test.
It turned out that they used the inserted catheter to insert some photo sensitive imaging fluid into my bladder and then they took some pictures. Other than some slight discomfort of having a full bladder it was not an unpleasant procedure. After I collected my x-rays I went to visit Dr. Chen. As he entered the examination room he told me that there was no sign of leakage, and then he proceeded to remove the catheter. After 2.5 weeks I was separated from that catheter. I felt like an anchor had been removed from my body. Of course now I had to cope with a free flowing bladder. In preparation for that moment I had limited my liquid intake that day, but more importantly I slipped a Depends in my newly acquired jockey shorts (I used to wear boxers).
Good – but scary - Pathology News
Almost five weeks after my surgery I received a personal call from Dr. Chen (a very much appreciated personal relations characteristic), asking how I was doing and notifying me that they had completed the analysis of my Prostate. The news had some surprises but was positive. He said that the final report had raised the level of my Gleason Score from 6 to 7 (meaning that the cancer was slightly more aggressive than they originally thought), the cancer was actually located in four places in my Prostate. None of the tumors had touched the surface of the Prostate, but that one of them was a little closer to the neck of the bladder (within 0.1 mm) than what they would have liked. While the latter statement engendered some concern from me, Dr. Chen assured me that all of the margins (edges that were cut) were free of cancer cells. I shuddered when I reflected on what would have happened had I not acted as fast as I did.
I always felt that I would not be permanently incontinent, but the question was how long would it take. The literature that Dr. Chen provided indicated that it could take months. One of the books that I read on the subject had an example of a man getting pretty much control after several days. Before I left his nurse instructed me on the use of Kegel exercises, and I did then as often as I could - which turned out to be many times per day. With a supply of Depends in hand I started to go to work the following day. My general procedure during that week was to go for a 3.5 mile walk each morning and then go to work for as long as I could, which turned out to be about 3 - 4 hours each day.
The day after my catheter was removed I fully expected to be sleeping in a wet bed, but the good news was that I would sleep for an hour or two and get up to go to the bathroom. I found that my Depends would stay dry all night (a reflection of the law of gravity). However, the same was not true when I was up and around during the day. Even though I never had the sense of having a full bladder, I would still drip between trips to the bathroom, and since I did not like the feeling of having a wet pad I would change my pad several times per day. By Friday of that week (four days after removing my catheter) I began notice some subtle improvements during the daytime. In some ways it was like waiting for water to boil. You stare at the water looking for any sign that the water is close to a boil. Actually the most definitive sign occurred two weeks after having the catheter removed when I noticed that I did not need to change my Depends as frequently. I now had hope for better things to come, and I resumed my Kegel exercises with renewed vigor.
I went into the weekend prior to my 6th week following surgery in great spirits. I could see a definite improvement with my incontinence problem and I had begun jogging on my daily 3.5 mile walks (plus doing sets of push-ups along the way). However even more significant was the fact that I felt that I would be able to start playing tennis again. All that abruptly ended on Sunday, when I discovered that in addition to my dripping coming to an end I was barely able to urinate at all. I immediately began to think that I had some blockage that was causing it. On Monday morning I immediately called Dr. Chen's nurse. She told me that it was probably due to stress continence (the bladder being too full) and suggested that I could either go to a local emergency room or to come to M.D Anderson. I said that I was on my way and arrived at the clinic at about noon. They took me back to an examination room and about an hour later the nurse came in with a device that was designed to measure the strength of my urine flow. When she came back to check a short time later, she learned that my flow was not measurable. A short while later she came back and told me that Dr. Chen wanted her to insert a catheter. She tried to get it in several times but failed and left to report back to the Doctor. Shortly later she returned and told me that Dr. Chen wanted to have a look with a Cystoscope. I wasn't too concerned about getting an examination with a Cystoscope because I had had them before. It is not a pleasant experience but not too bad since they insert an anesthetic gel prior to the device itself.
However, in the back of my mind was a statement that I had read somewhere where a patient in describing the procedure said that if they are using a flexible scope it was not big deal, but if they used a rigid scope that one should run - not walk - from the room. When I got to the room they had me lie down on my back and raise and spread my legs on some supports. There I was for the world to see, but I had long since lost and superficial dignity along those lines. The nurse inserted the gel, and while they waited for it to take effect, I heard the Doctor who was going to perform the procedure ask the nurse if he was supposed to use a rigid one. My ears picked up and I asked if he was planning on using a flexible scope. He said "no - it would be a rigid scope". My confidence immediately vanished. He said that I would feel some pressure, and proceeded to push my genitalia down with a lot of pressure. Looking back at it I assume that the problem with a rigid scope is that one's penis does not make a direct line to the bladder - so they have to line it up. He was able to push the scope into my bladder, and by the time that Dr. Chen had arrived he had inserted water and was looking around my bladder. Dr. Chen took a look and they discussed the scar tissue that had formed and was blocking things up.
Dr. Chen talked about cutting the tissue, but then decided that it would be best to insert a catheter for a while to keep the channel open. Out came the scope and for the next 15 minutes they attempted to insert various size catheters - but to no avail. With all the force that they applied I was worried that something was going to break loose. Finally I heard Dr. Chen say that they should insert the scope again and that they would run a wire through the scope to pull the catheter in through the scope. Not being able to see what was happening and not being familiar with the appearance of any of these devices I just laid there with my legs shaking from the trauma that my body was experiencing. A short while later Dr. Chen indicated that they had succeeded and that I could keep the Catheter in until Friday or the following Monday. Since I concluded that a longer time would be more likely to be successful than the shorter time I opted for Monday. So as I write this paragraph (on Saturday) I am once again in a count down to get the catheter removed. This go-around with the catheter seemed to be more stressful then the last occasion. I don't know if it was due to the fact that this was not planned or that I was not confident that this was the final solution to the scarring problem. In any regard, it was a fairly depressing week. Although when I left work one day feeling all depressed and sorry for myself, I looked up to see a blind man walking with a feeling stick ahead of me. It kind of put things back into the proper perspective, and I immediately pulled myself out of the depression.
On Monday I drove back to Houston to have the catheter removed. Prior to removing it they injected some solution into the bladder through the catheter to see if it would run out when they removed the catheter. Sure enough it did, but Dr. Chen told me to stay around the hospital for another hour to see if I was able to urinate normally. I then left the urology clinic and went to the cafeteria where I proceeded to drink over a quart of water. My mistake was that I all of that water would come out at once. I was wrong. Sure enough after about 45 minutes I felt the urge and sure enough I was able to urinate. I got in my Explorer and started to leave town. Ten minutes later I developed another overwhelming urge, which I attended to at the first fast food restaurant that I could find. That pattern went on for the next hour and then gradually subsided until I got home. But the good news is that the week with the catheter has apparently worked and, in addition, I have even better control over my bladder than I did before. Thus seven weeks following surgery I was feeling quite hopeful.
The following week I flew to Virginia to spend Thanksgiving with my mother. Prior to leaving I observed that my urine flow seemed to be a little slower than following the removal of the catheter, but I figured that that nothing would happen during my ten-day vacation. I was wrong. After a few days in Virginia I decided that it would be a good idea to find a urologist in the area - just in case. I contacted the only urologist group in the area, and found that one of their members had an office close to my mother's home. I went to his office thinking that I could make a get acquainted visit with him. No such luck - the earliest I could get an appointment was December 22.
Since I was planning on returning to Virginia for Christmas I went ahead and made the appointment. During the next seven days that I was there I noticed a continual diminution of my urine flow, to the degree that the day before I was scheduled to return to Texas I decided that I better visit my Virginia urologist. I called his office and explained my situation, and was told that the doctor would call me back. After waiting by the phone to no avail for a couple of hours I called again. This time his office told me that they had spoken to the doctor and he said that I should go to the emergency room of the hospital if I was retaining urine. I decided that I would try to make it back to Texas day and get to MD Anderson as soon as possible. I went to bed that night and woke up at 1 P.M. in the morning. I tired to urinate, but could only produce a drop at a time.
Since my mother was elderly and would not be capable of dealing with an emergency situation, I called the emergency room of the hospital and they told me to come in. After being processed in I met the ER doctor and explained my situation. He told me that they would try and insert a catheter. I told him that, based on my prior experience, I doubted that he would be successful. A few minutes later a nurse came and made a valiant effort but failed. The ER doctor said that he was going to call a urologist in. Now this is the funny part if you enjoy gallows humor. At three A.M. in came the doctor that I had tried to see in the afternoon. He immediately tried to lay the responsibility of his failure for not seeing me sooner onto me. A few minutes later they brought in a cart that had "Difficult Cath" written on the side. He then proceeded to insert a very small tube, which with some effort he got through to the bladder. He then inserted larger attachments, which I believe slid over it to enlarge the opening. He would udder "here come another one", and I would scream in pain. After about the fourth one the opening was large enough, and he inserted a catheter. Once again I was wearing my dreaded catheter. This time I decided that it was a lot better than worrying about urine retention.
When I got back to Austin I contacted MD Anderson, and was there on the following day. Since it was not a day that Dr. Chen was supposed to be there, they had me scheduled to see a different physician. However, when I got there Dr. Chen popped into the waiting room and asked about my condition. Before I began I showed him the article that I had written for the American Statesman. He read it and seemed quite flattered that I had spoken so positively about him and MD Anderson. He decided to see me himself, and once again I found myself on the examination table with my legs in the air. This time he decided to make a couple of small cuts in the scar tissue, and I left with another catheter in me. I kept it in until the following Monday, and removed it myself. That was actually pretty simple. While in the shower I cut the end of the folley tube and the catheter just fell out.
For the next couple of weeks I continuously observed my urine flow until a week before I was scheduled to return to Virginia. This time I would be driving. Again I noticed that the flow was slowing. Not nearly to the extent previously, but still slowing. What is wrong with me. Again I called and drove to Houston. In goes the Cystoscope, but this time the nurse showed me how to insert a catheter. In fact I inserted the Folley myself this time, and they gave me another one (not nearly as soft as the Folley with the instruction to insert it one every 7 days.
I drove to Virginia with no problems. I found that the catheter that they provided was too rigid so I inserted the Folley with no difficulty. On December 22 I kept my appointment with my Virginia urologist. He told me that he believe that I should be using the catheter one a day instead of every 7 days, and provided me with a softer one than I had gotten from MD Anderson. His logic seemed reasonable so for the rest of the time that I was in Virginia I dutifully inserted the catheter with no problem at all. At this point (14 weeks after surgery) the problem with my scaring seemed to be under control. However, my incontinence remains. It certainly is not as bad as it was, but I still am leaking. I do really well lying - pretty well sitting - fair walking and really poor playing tennis. I just hate the warn feeling that I get in my penis when the urine leaks out. I dutifully perform my kelso exercises.
Sixteen weeks following surgery I returned to MD Anderson for a checkup and my first post surgical PSA. My intention was to arrive early so that I could resolve some issues associated with my bill, however for the first time since I have been traveling there I had great difficulty finding a parking place. I actually had to drive from bottom to top in three of their parking garages before I found a parking place in the 4th garage on the seventh level. I was able to find their customers services area and spent a little time with one of their reps prior to getting my blood taken and seeing Dr. Chen. While I was talking to Dr. Chen his nurse Cheryl came in and told me that I should visit the examining room next to mine when I was done, since there was a couple waiting there (for Dr. Chen) who wanted to meet me. When she told me that, I assumed it was one of several men who I had encouraged to go to MDA, but it was actually a new couple that had read my article in the Statesman and had insisted on seeing Dr. Chen. I spoke to them for a while and promised I would send them a copy of this paper so that they would be aware of my experience. I left Houston, without knowing my PSA, but feeling pretty good about the good that has come from my newspaper article.
Without having achieved full continence the thought of sex has not been in the forefront of my thought process. However it is not so far out of my mind not to do a little research on the subject. It turns out that the nerves that control the blood that is pumped into the penis (during an erection) run along side the Prostate. In my case I was able to have a bilateral nerve sparing procedure meaning that both nerves were intended to be saved. However, since these nerves are not color coded, as in the case of anatomy diagrams of the human body, there is plenty of opportunity for them to be destroyed or damaged. Although they do not effect the sensations in the penis nor are they responsible for orgasm, they play a major role in the sex act.
Seven weeks after surgery I do not know to what degree they were impacted by the operation, but I do know that they are now yet operational.
Fourteen weeks after surgery - same story.
Six Months After Surgery
My Incontinence has now improved considerably. I still do my Kegels a number of times a day and I still use my Depends. I probably could get through the working day without them, but late in the afternoon and in the evening I still drip a little. It is a very slow improvement, but I am still improving - which still gives me hope.
There is still no sign of improvement in this area. The last time that I visited Dr. Chen he offered to give me a prescription for Viagra. I declined at the time because of my incontinence, but I think that I will try that on my next visit. I also may try to get a pump.
Just before Thanksgiving I wrote a summary of my experience and sent it to the local newspaper (Austin American Statesman). The paper liked the article, send a photographer out to take some pictures of me and published the article on the Friday after Thanksgiving. The great thing about the article was that, although I received a number of phone calls of appreciation, three men who otherwise would not have pursued checking their own condition, did go on to have more intensive tests and discovered that they had Cancer. Within the last month they all elected to have surgery (two at MD Anderson), and they are all in the process of recovery. I feel really good that I was able to provide them with some guidance.
Twelve Months After Surgery
I have had several PSA tests by now, and they are showing a negligible reading.
My Incontinence has now improved considerably, but I still wake up occasionally with wet underwear when I take a nap while sitting in my easy chair at night. I do real well during the day, particularly while I am sitting, but I drip a lot when I run or participate in active sports. After one of my visits with Dr. Chen he suggested that I might benefit from Collagen injections. He set me up with a physician at MD Anderson, who specializes in this type of treatment, and following a skin test to determine if I was allergic to Collagen, she did a cystoscopic exam to determine if I would benefit from the injections. As strange as it may seem, this experience with the cystoscope actually had the enjoyable aspect of me being able to watch (on a television screen) the scope proceed through the urethra and into the bladder. Her conclusion was that the scar tissue that was present was not conducive to the collagen treatment. I accepted her decision because I was pretty well convinced that I could live with my present level of incontinence, but I was not willing to risk anything that might make it worse. I still do my Kegels as many times as I remember during the course of the day.
I am still not showing any signs of improvement on this front. Viagra doesn't do anything. After discussing this with Dr. Chen I decided to purchase a vacuum pump to help in getting an erection. The pump has its problems, and it certainly takes the spontaneity out of sex, but it works. I experienced my first orgasm since my operation.
Eighteen Months After Surgery
The very best news - my PSA has remained negligible.
My Incontinence still shows signs of improvement. The wet underwear that I used to experience when snoozing in my easy chair is less frequent. I still drip a little when I play active sports – but I can live with it. I don't get much sympathy from women because, lacking a Prostate, this is a problem that they seem to accept.
My pump has worked fairly well, but I still long for the old days when an erection was initiated from within. After a lot of reading on the Internet I have decided to try injections. I discussed this with Dr. Chen and he agreed that it is something that I should try. The bad part of it is that MD Anderson does not get involved in this type of treatment, especially from long distance, so I must find a local doctor. in Austin to work with. I tried calling a number of Urologists from the phone book to find out if they specialized in impotence, and their office staffs consistently reported that each of them did. So once again I was faced with the task of finding a local physician in which I have confidence. It is not a life threatening situation, as it was with Cancer, but still very important to me. After a number of phone calls I located one that I had a good feeling about, which was largely based on how I related to their office staff – actually not a very good way to find someone. I had my first appointment with him, and he provided me with a sample of Caverject. My readings on the Internet have not been that positive about Caverject, but I intend to give it a try, as soon as I get my courage up.
Bad News About Dr. Chen
The other evening I received a telephone call while eating dinner. Since those calls typically are some form of solicitation, I generally make a decision based on the greeting of the caller that results in my telling them that I am not home. However, this time I took the call and it turned out to be from Dr. Chen from MD Anderson in Houston. He told me that he was leaving MDA to take a position in Denver and that I would be assigned another physician at MDA. Since I believe that my Cancer was arrested, this was disappointing but not devastating news, but it was so in keeping with Dr. Chen to call me and give me the news first hand. What other doctor in his position would do that? I think that if I ever have a recurrence of my disease I would go to his new location. He also gave me some good news that in about 7 or 8 months MDA was planning on starting a Erectile Dysfunction clinic. I will certainly look into that.
So what did I learn from this experience? Actually - quite a lot.
First, I am quite vulnerable to cancer and other insidious diseases. I used to think that my healthy life style and good character would protect me from disease, but I am sure that MD Anderson is full of people who never thought that it would never happen to them. The truth is that we do not know why some people come down with cancer yet the statistics are that 200,000 men will be told that they have Prostate cancer this year, and 37,000 will die from the disease. The key to survival is early detection.
Second, everyone should take complete responsibility for his or her bodies. We need to believe that we are the CEO (Chief Executive Officer) of our body. Doctors are people that we hire to advise us. We should be aware of all the medical tests that should be taken during our physical exams and make sure that they are completed. During my brief difficulties with my Prostate, my doctors or their staff made numerous mistakes that I was able to detect. I can attest that doctors are quite human, and they do make mistakes, but it is up to us to choose the right doctors who are going to take care of us and to monitor and critique everything they do or don't do. The reality is that nobody cares more about your body than you do.
Don is now 64 and his PSA is less than 0.10 ng/ml. This is what he has to say:
Since my last update life has been very good. I have my PSA checked every 6 months, and although I am a little apprehensive as those checkups come up, they have all shown negligible readings.
I continue to have mild stress incontinence, which is an annoyance and I remain impotent which is mitigated by a loving considerate partner and a vacuum pump.
I view myself as being very fortunate to have discovered my disease early, and I do not regret my choice of treatment. I would be happy to discuss any aspect of my treatment and recovery with anyone who is interested.
Don is now 65 and his PSA is still less than 0.10 ng/ml. This is what he has to say:
I have had many changes in my life over the past year. I married my very best friend, and moved from my Texas home to a home that I inherited from my parents. I am still working at 65, although I am thinking more and more about retirement. My health is great, and my tennis is as good as ever. I have enrolled in a Spanish class in preparation for some trips to Latin America. I have no regrets about my decision to deal with my Cancer.
Life is good. I retired at the end of last year, but I returned to work for a four month contracting job. My tennis is good, and I completed my second semester of Spanish. It was interesting and fun to study Spanish with teenagers in our local community college. My only regret about my surgery six years ago is that they did not have some of the surgical tools then that they do now.
It has been almost 8 years since I had my surgery. I lead a very active life. I am retired from the company where I worked for 38 years, but I continue to work for them for 20 - 30 hours a week as a consultant. I live on a small wooded acreage, and I spend a lot of time clearing dead wood and cutting firewood. The little time that I have remaining I spend exercising and playing tennis. My health has been good. I continue to have some of the mild side effects associated with surgery, but I have no regrets about the choice that I made 8 years ago.
I am doing fine. My wife had a shock this summer, when she was diagnosed with a kidney tumor. We were able to get her into MD Anderson, where I had my prostate surgery, within a week; and she had a successful surgical treatment. I was surprised to see how much MD Anderson has grown since I was there 9 years ago; but I highly recommend them for cancer treatment.
WOW - Terry reminded me that it was 10 years ago that I was diagnosed and treated for Prostate Cancer. I am doing well. I do not regret the surgical procedure that I selected, I only wish that some of the more recent advances in surgery would have been available to me at the time of my surgery.
My health is good and I am looking forward to my next attendance at John Newcombe's Tennis Ranch in Texas to continue to improve my tennis game.
Everything is going well for me. I have had a few minor surgeries not related to "C", and they have all gone well. I have no regrets on my choice of treatment.
I have no regrets about my treatment decision.
My life is good, and retirement has been fun. I have a lot of chores associated with living on rural acreage in Virginia. I play tennis and golf regularly and I have recently taken up wood turning and Photoshop photo manipulation.
My health remains good. I had a mild concern when a recent PSA came in at less than .1, although it had been consistently reported at less than .01 since my surgery 13 years ago. Although my physician did not view it as a concern I had a subsequent PSA check several months later, and it came in at less than .02. This difference was explained to me as being associated with the sensitivity of the lab equipment. I have accepted that explanation, but my PSA is something that I follow closely.
It has been 14 years since my surgery, and I have no regrets - particularly when I see men who have chosen to do nothing.
It has been 15 and years since surgery. I'm doing well and have switched from tennis to Pickleball for the sake of my knees.
It has been 16 years since my surgery, and all is going well. I am heavily into Pickleball, and I have increased my Yoga practice significantly.
I just celebrated my 18th anniversity since cancer was detected and treated. I am doing well with my recreational activites that include wood turning, Pickleball, Yoga and biking.
Don's e-mail address is: austindon AT yahoo.com (replace "AT" with "@")