Treatment decision start

Prostate cancer, as previously mentioned, is a slow growing very treatable cancer. The fact it’s slow and treatable means, as a patient, you have time to make a decision the path your treatment should follow. The following is my thought process. Is it the best? I don’t know. It’s what made sense to me. Time will tell. Each prostate cancer patient must reach his own decision. In the end I believe if you have confidence in your treatment and truly believe in its efficacy it’s the best treatment.

With the diagnosis came the first bit of advice. Get a second opinion of the biopsy. I chose John Hopkins because I recognized the name of the institution. As it turns out the biopsy came out a little bit more concerning. A higher percentage of the samples had cancer. The Hopkins doctor, Jonathan Epstein, was recognized by every doctor I showed the biopsy report as an authority. I now new I truly had a cancer. I could not ignore it. One severe enough I could not in good conscience follow a holistic path to treatment. I knew I had to be aggressive in treatment. (Was the biopsy sample being passed around mine?)

Once you know you have the big “C” what do you do? You ask your doctor, the internet and everyone else you know. You just can’t be too proud. The “everyone else” and the internet part are very important. This is the knowledge equalizer. A doctor has a handicap. First let’s give the doc the benefit of the doubt that he is not concerned with his pocket book and is concerned with his patient’s wellbeing. To be a doc he is smarter than most. He has gone to school and has committed his life to becoming an expert in one aspect of treating a patient. If he is a surgeon he may know everything there is to know about removing the prostate from the male body. You know he is so busy during the day in surgery or seeing patients he doesn’t have much time to study outside his specialty. You know that don’t you? How long did it take to get your appointment with your urologist? Yep. You need more sources of information. The bottom line a doctor will recommend what he does best. After all he is good, he chose this solution to practice it must be the right one.

The urologist I had originally gone to did not treat prostate cancer. She referred me to her partner who did. In the two weeks I had to wait for the appointment my world went through a dramatic change. Work did not mater. Prostate cancer knowledge consumed all of my time. One theme came to the forefront to guide my thinking. Prostate cancer is treatable slow growing. All of the treatments have about the same success rate (yes there are percentage differences). All have side effects of varying degree. I decided side effects were my biggest concern, the main ones being impotence and incontinence.

Connye and I looked at what we could deal with. Impotence would be an issue but we could deal with it. Incontinence went to quality of life wearing diapers did not appeal to me in the least. My evaluation of the treatments revolved around those and other less dramatic side effects.

Anatomically god did not design us with any wasted space. The body is a marvel of efficient space management in its design with minimum separation of a few cells between organs, glands and structures. The urinary flow starts at the kidneys. As they clean the blood they extract waste, urine, which is dumped into the bladder. The bladder holds the urine until you can find a convenient time to unload it. The bladder has a sphincter which we have to consciously release to let the urine flow. This involuntary sphincter is located at the neck of the bladder against the prostate. It’s connected to the urethra which goes through the center of the prostate to the outside. Just before the urethra goes through to the penis and out there is another sphincter. This one is voluntary. It’s the one when you really have to go you clench. When the prostate is removed the involuntary sphincter is cut out leaving the one sphincter you lose control of when you sneeze, cough, laugh… you get the message. If any sort of radiation is used the bladder and its sphincter is close enough to get in the way.

Bolted to each side of the prostate is the nerve bundle which gives you that wonderful erection when sexually aroused. The doc when removing the prostate has to be careful to leave behind the nerve bundle, uncut, and with the blood supply intact so things work. If radiation is chosen what hits the prostate also hits the nerves. It’s not a pretty picture no matter what treatment is chosen.

My good friend, Jeff, who went through a robotic surgery, chose it for numerous reasons. The one that stuck in my head was his prostate was large enough he had to self catheterize to allow the urine to flow. Removal made a lot of sense to have normal urine flow. My good friend Roger chose proton therapy because it did not make any sense to him to do something as invasive as surgery. These two treatments because of these guys experience became my focus.

Now comes the interviews.

Start

November 2007

My cancer journey becomes fully formed in November of 2007. Although cancer became a reality early this month I have been dancing with it for almost two years if not longer. In 2006 a visit to a doctor for a possible sleeping problem cancer announced it may intrude in my life. A blood work up was requested to figure out the source of my sleep issue which fortunately included a PSA test. The test came in at 4.5, clearly above the concern cut off of 4.0. This now became the focus of action. As an aside within a day of this initial visit I started to sleep normally.

From this initial PSA report the word cancer was never far from my thoughts. In the middle 1990s a good friend, Roger, was diagnosed with prostate cancer. Like all great engineers, which he still is, his research and thoroughness led him to Loma Linda for successful treatment. His experience was instantly recalled which immediately started the discovery process. I must admit my search for treatment was half baked at best with a lot of denial. After all I wasn’t diagnosed.

The standard next step is a referral to an urologist. At 56 I was considered young for prostate cancer. As I came to learn prostate cancer is generally slow growing so when the doctor suggested we wait a couple of months and redo the PSA it sounded good (a little more denial?).

A few months later I had more blood drawn for another PSA test. It came back at 4.6. My computer started to find more info related to prostate cancer but still I was not too serious. After all someone as healthy as I am with good eating habits doesn’t stand a chance to get cancer! In good conscience I can’t deny nor ignore the high PSA reading. I agree to have a biopsy and it's scheduled. The prostate lies just behind the pubic bone and in front of the rectum. The rectum provides the easiest access to the prostate. Biopsies consist of about a dozen needles inserted through the rectum into the prostate. If the doc is good and uses the equivalent to Novocain to numb the pain then it’s a painless procedure. The biopsy came back negative- no cancer. Dodged that bullet!

Why was the PSA so high? Why would the thought of cancer not quite leave the back of my mind?

Normally as men age the prostate grows producing more PSA. If it is not cancer then it’s a disease called BPH (Benign Prostatic Hypertrophy) or some other infection. It’s the reason why older men have to get up at night to pee or have weak urinary stream. This was becoming truer for me. The doctor thought we would let things ride for another quarter and check the PSA in another quarter which comes back at 4.7. It could be some sort of low grade infection which led me to a month’s worth of a daily dose of Levaquin, an antibiotic.

By early 2007 my PSA had risen to 4.8 which meant the Levaquin had no effect which means I had no infection. I was concerned but determined I would not do another biopsy. At the end of 2006 a good friend, Jeff, had gone in to have a prostate biopsy. Two days later he was in a coma in ICU with septic shock. As a large group of his friends were in the ICU waiting room there was a sense of hope and a real concern a good friend may not make it. Through amazing good fortune, Jeff was treated by one of the few hospitals in the United States to use a new treatment protocol for septic shock. He survived only to find out he had prostate cancer. The message here is anytime someone has to access clean parts of your body through one of the dirtiest bacteria infested area, the rectum, there is a high risk of infection. A minimum of three days of antibiotics should be prescribed.

Under quite a bit of pressure from the doc to have another biopsy I make an agreement I would but only after I have another PSA test in the fall of 2007. I figured if the PSA was close to the same I just and would take my chances without another biopsy . When the PSA came back at 6.3 I knew I had cancer. I really didn’t need the confirmation of a biopsy.

PSA of 6.3 and a Gleason score of 3+4 are aggressive enough. Not terrible but just can't be ignored.