THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2012 SO THERE IS NO UPDATE.

One year earlier I had gone for my routine, annual PSA draw and DRE follow-up. In October, 2004, I returned a week later, after the draw for the PSA. My urologist was cautious, but optimistic (as I was already on Flomax for prostate issues). So, as usual, we proceeded to the DRE portion of the annual examination.

I guess things became a blur after he said the ominous words to me, "Sit down, Joe."

I had been thankfully pulling up my pants, smiling, glad to have it over with and prepared to leave his office, officially cancer-free for another year.

I sat down and he began.

He explained to me that he had felt a palpable mass on the prostate. He pulled out his Pharamaceutical-company-provided model of the prostate and showed me the areas of the detection and then explained to me the Gleason grading system. He staged the detectable mass as a T2a. He explained to me that, at this point, and with a PSA as low as mine, that the decision to have a biopsy or not was entirely mine. He also explained that probabilities were that 2 out of 3 men with statistics such as mine would be resolved as having BPH or some other non-cancerous outcome.

I know my luck, however, and opted for biopsy. Thankfully my insurance was sufficient, and the urologist was a customer at my restaurant and I had the biopsy performed while sedated. Our relationship also resulted in much decision making along the way by the urologist motivated by a real concern for me as a person rather than a client.

Numbed by my urologist's words, "Sit down." the day he discovered my cancer, I took my wife with me for the results of the biopsy.

That day reminded me of every time I had lain in bed as a small child and contemplated "death" after having fully digested the new-found concept. I had the same warm, nauseous feeling in my stomach when he explained the results listed on the paper I held in my hand:
13 core samples. All had cancer, most had 70-85% cancerous cells, perineural invasion, but no evidence of escape from the prostatic capsule.

I was devastated! I knew nothing of this disease, save the fact that I was awakened in the middle of the night a couple years earlier by the flashing lights of the ambulance which carried away the deceased body of my neighbor. I learned later that he had died of prostate cancer. I didn't know what it was. I didn't want to know what it was. I was convinced I would never have to deal with it!

Reality, though, had come home to roost! I had it. I had Prostate Cancer. Furthermore, if I listened through the queasiness and panic I was feeling to what the urologist was saying, I needed to do something, and I needed to do it sooner rather than later.

We had another couple meetings before I made a decision. He was honest and fair in presenting all my options for treatment. He expressed more than once his concern that, since I was in excellent physical condition and had done my part in taking care of myself all my life that he would recommend an option which would have the least effect on my quality of life, but would also offer the greatest opportunity to extend that life as long as possible given my family history of octogenarians and centenarions.

He recommended RRP, explaining the other options available. He spent a lot of time with me detailing the various procedures, their outcomes, and their side effects. He pulled no punches and he came highly qualified having performed over 300 RRP's in residency. He also went so far as to present my case to his professors and colleagues as he considered my cancer (which presented itself in less than a year and which also indicated its aggressiveness in the low PSA it presented) a departure from the norm.

He also explained to me that Protate was one of the slower growing cancers, though, mine was an anomaly and he recommended treatment sooner, rather than later.

On December 7, 2004, I underwent RRP. I chose this treatment because I had, since diagnosis, been online with various support groups and I had researched until my fingers could no longer type. All signs and suggestions pointed to the fact that my young age (57) suggested RRP as best among treatment modalities. My urologist recommended it, after having first explained the concept of "nerve sparing" and Robotic Laparascopic Prostatectomy. He stated simply that in RRP he would actually be able to "feel" tumorous tissue.

I was fortunate to own an established restaurant at the time. I had a good health insurance and was able to take the entire two months after surgery that I required for recovery. I was, however, not prepared for the post-surgical biopsy: Gleason 4+5=9, especially since the urologist staged it as not involving the lymph nodes and not having escaped the prostatic capsule.

I was a miracle! I had almost the highest Gleason score I could have and yet the cancer had not detectably escaped the prostatic capsule, had not involved the lymph nodes, and, had not metastasized.

The key word here is "detectably." It was explained to me that metastases could present themselves much later from the escape of even a few cancerous cells, which would not present themselves as detectable at the time of escape. Having been a member of enough support groups to understand the concept and what remedies were available to me, I decided to consult an oncologist (again, known to me as a patron of my restaurant, a friend, and regarded in the medical community as on the "cutting edge" in treatment modalities).

It must also be stated that my urologist met with my wife after surgery. She swears he had a tear in his eye (he is only 41) as he told her that he just "had a feeling" while performing the surgery and the evaluation and, based upon that feeling, decided against "nerve-sparing" and removed nerve bundles on both sides of the prostate as well. Thus, erections were not part of my decision making in choosing further treatment modalities.

The oncologist explained that he already had two other patients presenting even more severe Gleason grades whom he had been treating based upon newer treatment modalities. Though there was no protocol for these modalities, he was having significant success with them with these two patients. As he explained the modalities, I recalled having seen comments and scientific articles about them from the support groups I was on.

I chose his recommendations and began a regimen which included first chemotherapy, followed by Lupron therapy for one year and 72Gy EBRT (External Beam Radciation Treatment).

I have remained undetectable since the RRP and rolled the dice on the Oncologist's recommendations for additional therapy. Though my urologist assured me that he had removed all the detectable cancer, I truly wish to fulfill the family legacy of centenarians!

It is now July, 2008. My PSA remains undetectable at < .01.

Continence returned slowly but steadily. Stress incontinence is still a factor but is at least predictable. Fatigue seems to be a primary contributor to stress incontinence as does heavy lifting. Coughing and sneezing are not factors at all. In fact, I am certain that I am as close to continent as one can be after an RRP.

ED is still an issue, and with both nerve bundles removed, will probably remain an issue. Pills have not been effective, shots hurt (not the injection itself, but the after effects). Vacuum pump works, but requires preparation and does take the spontaneity away. Glowing reports on implants from my peers, however, have me considering that option.

I am happy with my outcome thus far and believe my decisions to have been the best for my circumstances. I would urge others, however, to do as I did and seek as much information and experience possible before choosing a treatment modality.

I am now approaching 5 years out from RRP (Dec. 7, 2004). Gleason 9 is a scary proposition no matter how you cut it. At five years out, I feel blessed to have a PSA @ < 0.01.

I attribute this to the excellent counsel of a cutting edge oncologist, Mark Moskowitz, in Naples, FL who urged me to attack this beast aggressively.

Six years since surgery and other treatments and PSA is still negligible. Post-op Gleason 4+5=9 makes me feel a very fortunate person!

Stress incontinence is still with me but minimal when not working (almost non-existent on weekends).

Since my physician knowingly took both nerves, ED is a fact of life. Absolutely hate injections and the pump, though effective, reduces the sex act to a mere mechanical exercise (for me). Pills are completely useless. Thus, I am seriously thinking of a penile implant especially given the glowing results most who have undertaken this seem to have had.

As a former "swordsman", I have been truly humbled by this disease. I would not wish it on anyone.

Joseph's e-mail address is: fanniesbake AT etcmail.com (replace "AT" with "@")

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