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John Heights and Rita live in Quebec, Canada. He was 50 when he was diagnosed in November, 2007. His initial PSA was 9.10 ng/ml, his Gleason Score was 6, and he was staged T1c. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

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

I am rarely ill. The only visits I made to a doctor in the last 30 years were those required for job and life insurance applications. On my 50th birthday, I decided schedule my "first" annual check-up. The digital rectal exam indicated a normal prostate.

The blood test for the check-up was done on Sep. 5, 2007. I was shocked when the blood test results showed a PSA of 8.43.

My family doctor referred me to a Urologist. Before seeing the urologist, my wife and I did some research. From what I read, a Free/Total PSA ratio test is a better indicator of prostate cancer. When I met the urologist, I insisted on a "Free PSA" test before having a biopsy. This test was done Oct. 17, 2007. The Free/Total PSA Ratio was 7.36; the Total PSA was 9.10. Not only was the Free/Total PSA Ratio dangerously low, but the total PSA had risen slightly in only 6 weeks.

The biopsy was performed Oct. 29, 2007. A week later I was told that 5 of 10 samples were positive with a Gleason 6 (3+3).

In retrospect, it should not have come as a shock since my father died of prostate cancer at 71 after being diagnosed at age 64.

UPDATED

April 2008

To continue my story, some details about my state of health prior to diagnosis. I'm 6' 185 lbs. For the past five years my only exercise has been walking the dog once or twice a week, mowing the lawn, or shoveling snow off a long driveway. Thanks to my wife, I generally eat healthy, well-balanced meals. Since my university days, I rarely drink alcoholic beverages (an occasional glass of wine or beer).

My doctor told me that being fit before surgery generally improves recovery rate. As a result Rita and I bought ourselves a treadmill for Christmas and I began running about four days a week. I was up to 3 miles in 30 minutes prior to surgery.

Since I mentioned that my father died of prostate cancer, I'll quickly summarize his story here. He was diagnosed after he noticed blood in his urine. His PSA was normal. From other tests (DRE, biopsy, and MRI) he was told that he had a tumor that is now attached to the pelvis. He was treated with external beam radiation and ADT (his doctor advised that it was too late for surgery). The prostate cancer symptoms disappeared; but a couple of years later he had several tumors in his spine and ribs.

After diagnosis, my initial research revealed a multitude of treatment options. It seems to me that this diversity results from not having one clearly optimal solution. As a result, I agonized for several weeks over my choice of treatment and physician.

After consulting with five urologists, I made my first decision, which was to have a radical prostatectomy. The reasons for this were:

  1. if necessary, I could still have radiation therapy (whereas surgery after radiation therapy is generally not possible)
  2. all the urologists agreed that prostatectomy was the preferred option for my situation, and
  3. I liked the idea of removing the cancerous cells from my body.

This was based on the assumption that the cancer was well encapsulated within my prostate.

My next decision was to select the surgeon/technique (i.e. open, laparoscopic, or robot-assisted laparoscopic). From everything I read and have been told, experience and track record are the most crucial factors in selecting a surgeon for this procedure.
Recovery from open surgery is much longer than from laparoscopic (minimally invasive) surgery. Therefore I leaned toward laparoscopic prostatectomy, if I could find the right surgeon.

After watching some videos of robot-assisted and "traditional" laparoscopic prostatectomy, I found the robotic form much more appealing. In the Montreal region (where I live), there was only one surgeon who performs robot-assisted prostatectomy; but he had performed only 25 prostatectomies using the robot (Da Vinci) system. Unfortunately, this level of experience did not give me the confidence I needed to select him as my surgeon.

This narrowed my choice to two surgeons: One uses the traditional open technique; the other has been performing laparoscopic prostatectomies since 2001 and performed open prostatectomies for several years before that. I chose laparoscopic since the surgeon has a lot of experience, is highly regarded by other physicians, and was extremely well rated on www.ratemds.com (I found this site very useful). Surgery was scheduled for Friday, Mar. 14, 2008.

I had a pre-op blood test on Mar. 3. The PSA from this test, was 11.2 as compared to 9.1 from Oct. 17, and 8.4 from Sept. 5. This increase was in spite of having spent the past 3 months exercising regularly, eating better (more fruits, vegetables and fish; less red meat), and drinking 2 cups of pomegranate juice each day.

According to the surgeon, surgery went well and both nerves were spared.

I stayed in the hospital for three days after surgery. The pain was quite bearable. I didn't really need the morphine pump that was provided for pain management. Lower abdominal region was sore and stiff, but only painful if I pressed on it or when twisting to get out of or in to the bed. The most annoying pain was at the tip of my penis, caused by the catheter. The hospital gave me Tylenol and Colase (stool softener) regularly. I walked up and down the hallway outside my room (about 50 yards) 3 times a day. By Monday, I could pass gas but no bowel movement. Went home Monday afternoon.

Tuesday morning had first bowel movement. Fortunately, stools were quite soft, and I didn't need to push too hard. However, while pushing I also had the urge to pee, which was very strange since I still had the catheter.

I found that the swinging motion of the tube when I walked caused irritation and pain at the tip of my penis. The solution for me was to wear briefs style underwear and tuck the tube under the testicles, then bring the tube up slightly so that it comes out through the leg hole. With this setup, the tube moved only outside the underwear; the tight fitting briefs and leg hole stopped any movement of my penis and the tube from my penis to the leg hole.

Catheter and staples were removed on Mar. 25, eleven days after surgery. To remove the catheter, the nurse put a measured amount of water in my bladder. The tube sort of slide out on its own as I expelled the fluid. It was an odd sensation, difficult to describe, but I wouldn't say it was painful.

UPDATED

August 2008

30-Mar-2008

After 2 weeks I have absolutely no flow control. It's as though the catheter was still in place, since urine dribbles continuously if I am standing or walking. There is no leakage while I am sitting or lying down, but the urine starts flowing as I'm in the process of standing to get out of the chair or bed.

I do pelvic floor muscle exercises (kegels) regularly, 3 times a day: In the morning while lying down before getting out of bed, at lunch time while sitting, and in the evening while standing (usually in the shower). Each time I do a 2 sets of 10 kegels. For the first set I would not tense fully, but try hold while breathing out slowly. For the second set I tense the muscles as hard as possible, and not bother trying to hold it. The instructions I received from my doctor was to hold each for 3 seconds. I can barely hold for 2 seconds for the first 5 kegels, and not at all for the remaining ones.

19-May-2008

I now have some flow control. I can walk around the house, slowly, without leaking. When I get the urge to pee, I can (usually) make it to bathroom without leaking. If I take it easy, I can go a whole day without leaking! However it doesn't take much to cause a squirt or two: A cough or sneeze, even walking fast. This new found control didn't come suddenly. It's been a very slow, but steady, progress over the past 8 weeks.

Prior to surgery I drank 4-5 cups of strong coffee a day. My urologists advised me to stop drinking coffee while trying to re-gain urinary continence. He said that coffee has double whammy; it acts as a diuretic and caffeine irritates the bladder. I did as he advised for the first 2 months, but now that I've re-gained a significant amount of control, I've started drinking coffee again. However, if I drink more than 1 or 2 cups a day, in the evening I have frequent leaks and squirts for no apparent reason.

17-Jun-2008

Urinary continence continues to improve! I can now walk up and down stair without squirting. Most days I don't wear a pad. Still need the pad to mow the lawn or go for a run; still can't drink more than 2 cups of coffee a day It's been 4 months since surgery.

29-Jul-2008

Today I got the results of my first PSA test since surgery. It was zero!

I can now run without draining my bladder. Sprinting is out of the question, but I can run for 2 miles at 5 mph then get off the treadmill and go to the bathroom to empty my bladder. Most days I no longer worry about leakage. As I result I've stopped doing kegels.

The cancer's gone, urinary continence is back, now to start working on the erections...

UPDATED

November 2009

I will post a detailed update over Christmas. For now, here's a quick summary:

  • No PSA detect, tested every 3 months, now switching to testing annually
  • Continence, not quite as good as it was before surgery, but no significant control problems
  • Sexual function -- that's a longer story -- I'll provide details in my Christmas update.

UPDATED

August 2010

Not much has changed in the last 2 years. I've had several PSA tests (initially one per month, then once every 3 months, now twice annually) over the past 2 years. PSA undetectable in all of them.

Sometimes in the evenings, when I'm tired, I small amount of urine leaks when I yawn (or sometimes when I'm simply sitting watching TV). This happens once or twice a week. It's not significant, as far as day-to-day life is concerned, but I wonder if this will get worse as I get older.

I still do not have erections. I've tried Viagra and Cialis. They both help a small amount; Viagra seems to work slightly better than Cialis, but the timing must be just right. If I get the timing right, there's just barely enough swelling to allow penetration. Both drugs leave me feeling a bit lighted headed; a somewhat unpleasant feeling. For this reason, and for the sake of spontaneity, we don't always use Viagra when we have sex. Fortunately an orgasm doesn't require an erection!

I don't know if this is a common side-effect of prostatectomies: My orgasms are different than were before the surgery. They are not as powerful as before, but they last much longer. In fact, my wife, who has always had long orgasms, is jealous since mine now last longer than hers. Another strange difference: Just prior to the orgasm, there is a tingling just below my right hip point. This becomes a pulsating feeling through my right thigh during the orgasm. These effects are neither pleasant nor unpleasant, but they are rather odd.

John's e-mail address is: rita.heights AT gmail.com (replace "AT" with "@")

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


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