THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

In August of 2006 I had an annual physical with my general practitioner. He always does a PSA along with other tests. The results at that time were 4.3 ng/ml, but for me it had run high for years and I had an enlarged prostate. Despite those facts he referred me to a surgeon at UMass Med Center in Worcester. The surgeon discussed the results with me and we both agreed that we would wait until the first of the year to do another PSA and decide what path to take at that time. Well, the result was a PSA of 6.9 ng/ml and the surgeon telling me (not asking) that I would have a biopsy. Unfortunately the biopsy came back positive. From there the process of appointments began. The positive aspect, I was getting it early and the prognosis was excellent! Due to my age, excellent health and physical condition we decided on surgery. My wife is an RN so she certainly had a lot to say about the decision. At first I wanted robotic surgery, but my prostate was too large (and, as you'll see later, it's a good thing I didn't have someone try it). Radiation was out of the question to me. There are far too many negative side effects, especially for a guy my age. At any rate, my surgery was scheduled for May 31st and off I went.

I want to note here that some very caring friends who had gone through the surgery gave me a lot of tips and re-assurances, however, they urged me to go in to Boston for second opinions and to have the procedure done. This really confused me, at first, but some other friends in the medical field assured me that I would obtain equal or better care in Worcester. The bottom line, if you are happy with the surgeon and facility where you live, go for it! I'm not sure about small community hospitals, but I now feel strongly that the care and expertise in Worcester was at least equal to Boston. Also, for all of those post-op appointments and potential problems I would have been travelling a much longer way. Trust your instincts! If you are happy where you are JUST DO IT!

Now then, I gave my two units of blood and had all the pre-op stuff done. But I had a complication. A few weeks before surgery I woke up in the middle of the night and could not pee. It wasn't pleasant! The surgeon had me come right in (my wife driving, of course) and he catheterized me taking out an enormous amount. I remained catheterized for a week. He said this was a good thing because most men have never had a catheter. I would now know what to expect when I woke up from surgery. He said that, in his experience, the catheter is the biggest problem for most guys post-op. A small consolation, but one none the less! I then was put on Flomax until surgery. After some further tests I was informed that, despite the cancer, I would have had the surgery anyway due to the urination problem and probably just as soon.

Showed up for surgery early in the morning on the 31st. Everyone was very pleasant and helpful. The anaesthesiologist started an IV and then injected something into it telling me that it would take effect quickly. Next thing I knew I was in recovery! My surgeon keeps his patients in recovery for 24 hours which was very nice (or as nice as it could be after surgery). Due to a kink in the IV I kept setting off alarms. The nurses got so used to it that they would just yell to me and I'd say "I know. I already straightened my arm." They were great! The next day, off to the floor and, lo and behold, I snagged a private room! WOOHOO!!!

My surgeon showed up to discuss a few things (actually, he showed up in recovery, too, but I had no idea who I was where I was, who he was and I really didn't care at that point). He said my prostate was much larger that they initially thought, in fact, they notified other surgeons to tell them about it. Something like 90-100 grams! Also, even though I made a point of telling them pre-op that I had numerous hernia surgeries years ago, it turned out that there was a lot of scar tissue from those surgeries. My incision is huge! He said they had to chisel away at it to get to my prostate. Keep that in mind if you had hernia surgery. I had both radical and laparoscopic. The lap surgery left more scarring and adhesions! (So much for being non-invasive!) He also told me my Lymph nodes were fine and the cancer was confined to the prostate. My spared nerves looked good, but my recovery was going to be rough because of the size of my prostate.

Pain levels weren't bad, but I have been told I have a very high pain threshold. The nurses had to urge me to push the Morphine button. I didn't really need it. Getting up the first time wasn't too bad. I only made one circuit of the halls, but it was okay. Getting back in to bed, very rough! The burning at the incision was tough.

After a five day hospital stay and getting my Dopplers done I was off to home. My wife was great about everything! It is so important to be patient with your man and just give him some time to adjust. I opted to sleep on a couch in our great room over the garage. Kind of my own space with a TV, bathroom and the cats. That way my wife could sleep better, and I think I did, too! I have to be honest, the catheter sucks, plain and simple! The two weeks could not have gone by sooner for me.

At this point I am two months out. I got my PSA results today. 0!!! That's what you want to see! I am struggling with the incontinence thing, but I have to admit it's getting better, getting better all the time! I'm adjusting and it's improving.

I will add more to this later.

Hi,

Well, I'm actually coming up on a year already. At this time last year I was quite concerned.

My PSA continues to be 0 and my surgeon doesn't feel that will change. I'm still working on the incontinence. Night time is still no problem and overall it has improved. I'm down to one pad a day (two every now and then) and my wife, the nurse, feels that when my present supply of pads is gone I should get thin pads instead. She feels that the "man pads" are much thicker and are designed to absorb far more than I am putting out. I'm sure she's right. I'll certainly be glad when I don't have to use anything! A good friend who also had the surgery tells me it will get better and that the pads will go away.

Sexually we've experimented and I am achieving a reasonable erection without Viagra. I'm positive that, with Viagra, I'll be pretty much back to normal there. I guess I can't complain much, but we all do, don't we?

That's pretty much it for now. The best of luck to all of you!!!

Two years next Monday after surgery my PSA is 0. My sexual function is at 100%. I actually believe now that my sexual dysfunction prior to surgery was due to my Prostate as it was very, very large. I'm positive the nerves were being compressed due to that condition. Incontinence is still an issue, but not to a great extent. Again, my situation was not by any means average. The surgery took quite a bit longer and was more complicated. I wear a feminine thin pad and change it once per day. I was almost ready to stop using pads a few months ago, but I had a relapse of sorts and the leaking increased slightly. I function normally for all intents and purposes. Work, golf, hiking, working around the house and yard, traveling (hopefully to Australia soon) all are pretty much the same as they were prior to surgery.

I am very concerned that many men are either ignoring PSA completely and/or are declining treatment. It is obvious from my case that my Cancer was growing rapidly and that I could not wait. It is obvious from many cases involving friends and acquaintances that action of some sort is vital. I have a number of friends who will not make it much longer because they waited too long. There are too many confusing and conflicting articles concerning Prostate Cancer. One doctor from Nashua New Hampshire has published a number of pieces stressing a need to wait. I wrote to him with my concerns and he has never bothered to contact me. I live about 40 miles from there. Nice guy. I guess he doesn't like to be questioned. This condition concerns our lives. We all have the right to question. If I had waited I'd be dead. [Although Paul clearly has very strong views on the subject of early detection and early treatment, it is unlikely that he would have died within the two years that have passed since his diagnosis if he had not been diagnosed or if he had not elected to have surgery. Studies show a 5% or less disease specific mortality at 10 years and those are usually men with advanced and aggressive disease when diagnosed. This subject is explored a little more fully in The Elephant In The Room.]

At this point I am doing pretty well. The incontinence thing is irritating. I sincerely hope they develop a procedure or medication that will fix this problem 100%. I would say that I am at 90% at least (so I am aware that I should not complain), but I want to be free of this. Most of the time it is quite managable, but every now and then it will increase for a week or so. No idea why. I have tried increasing my Vesicare dosage with little or no effect except to get extreme dry mouth. I am also taking Gaba daily and I am not sure it is helping.

On the sexual side things are not all that bad. Not like it was years ago, but not bad.

I do get concerned when I talk to guys who are convinced that non-medical procedures (homeopathy) will take care of their prostate cancer. Every guy I know who has done this regrets the decision at some point (usually when it spreads and is out of control). [Current studies indicate that, in suitable cases, a good Active Surveillance program can effectively the risk of missing the 'window of oportunity' and result in men not having conventional treatment for many years, if ever.]

At this point, despite a very small continual rise in my PSA, (now 0.10 ng/ml) I am doing well. The incontinence is still there but under control 90% or more of the time. My doctor said recently that I should not be concerned about the PSA readings and that if it kept rising at this rate he would be concerned when I was about 78 years old.

I want to comment that I may have strong feelings regarding "watchful waiting" and "studies" may indicate "X", however, I have watched a number of friends die because they chose to wait. I am not, in any way, trying to scare people! I am saying, if you decide to wait get second or third opinions first and be careful of what "studies" you read about because I have been informed by authorities on the subject that not all are valid.

I'm sure there will be an editors note after this, but we need total honesty and openness when discussing this subject.

Also, I am sick and tired of hearing this comment from folks out there when they hear someone has prostate cancer "Oh, that's nothing!" [Anyone who says that simply does not know what he or she is talking about. Prostate cancer can and does kill thousands of men every year, BUT...... even more men are treated unneccesarily for this disease. The page The Elepehant In The Room sets out some of the issues for men to consider and the study Prostate Cancer Diagnosis and Treatment After the Introduction of Prostate-Specific Antigen Screening: 1986 - 2005 published in the prestigious Journal of the National Cancer Institute provides more food for thought.]

I am 5 years out now. I feel great and I am in better physical condition than I was before the surgery. I have no limitations regarding anything I do, in fact, I am doing more now such as extreme geocaching and golf.

I was naive enough to think the incontinence would just go away. I heard so many other prostate surgery recipients tell me that they had absolutely no incontinence. Now, I don't believe them. I honestly think their male egos have gotten in the way. On the other hand my incontinence is so minor now that I have stopped wearing pads. Occasionally I have a bad day or two, but overall it's not bad at all. I still carry a pad in my back pack just in case. My surgeon didn't lie. He told me before the surgery that incontinence would be an issue. I just didn't think it would be a long term issue (as in 5 years). I've learned that living with some things can be quite easy, especially when other folks around me have much larger problems.

The ED is manageable with Cialis. Wish it could be even better, but the equipment works so how can I complain. Guys, if you are in the early stages of this please stay positive! Very few of the guys I know suffer from extreme side effects. It's going to be very tough for the first 2 to 6 months. A very good friend had a really tough time for a while after surgery. I saw him recently and he's doing very well now. His surgery was last October. STAY POSITIVE!

I was sorry to hear of Terrys' current situation. My best wishes go out to him and his family. Regardless he is very much a survivor.

I continue to survive, as well. Though my PSA has gradually risen the doctors tell me that it is nothing to be concerned about. Seven years has gone by quickly. I feel great despite the fact that the incontinence increased slightly during the last year. Lately it has improved. I think it's weight related. Not that I gained a lot, but the small amount I did gain I believe contributed to it. As I reduce my weight it appears to improve.

Paul's e-mail address is: pairoldi AT charter.net (replace "AT" with "@")

NOTE: Paul has not updated his story for more than 15 months, so you may not receive any response from him.