Step 1: The start of the journey - diagnosis, prostate surgery and recovery.

In early December 2006, I had been in Lahey Clinic for a routine colonoscopy.  The doctor conducting the examination said that my prostate was enlarged on one side and that I should see my doctor as soon as possible.

This was a surprise.  The last annual physical had seen a PSA of 1.15 and there was then no indication that there was an enlargement, nor had I experienced any discomfort.  In January 2007 the new PSA reading was 13.5 (oops!).  Sandy Coulter (of Patient Advocates, my health plan) arranged an appointment at Brigham and Womens Hospital (B&WH) with urologist Dr. Hu, a pioneer in Boston of robotic surgery.  He confirmed after biopsy that I had prostate cancer and my Gleeson Score was 3+4=7.

With the initial diagnosis of prostate cancer, there are so many options: 2 types of surgery, a number of forms of radiation therapy, hormone therapy and then some more exotic stuff - the patient is expected to do a lot of reading!  I counted 17 different choices (and they were all different types of bad!) but chose robotic surgery because:

1. My surgeon was confident that the cancer was confined to the prostate;
2. If the cancer was only in the organ, removal of the prostate meant I would be cancer-free (i.e. cured!);
3. Robotic surgery offered a quick physical recovery and return to work.  I understood though that there would be work required on my part to restore urinary control.

Da Vinci robotic surgery

Surgery took place on 12 April at B&WH and I understand that there was unexpected and heavy bleeding due to the unusual siting of my abdominal blood vessels.  I awoke in recovery with a thick lip on the top RHS from the intubation.  The staff seemed to be in a hurry to get Lesley, my health proxy, to go home.  Once on my own they said that I may have had some form of stroke and wanted to conduct some tests to rule it out.  My later thought is that the fat lip from the intubation may have given me the appearance of Bell's palsy, and I suspect that they were having trouble with my Australian accent...

So, a battery of tests followed, MRA and CT scans among them.  Eventually, around 9.00 pm, Dr. Hu came in and wanted to know why I was still in recovery.  I didn't hear all the conversation but I did hear Dr. Hu say: "He's Australian, he speaks funny anyway.  Get him out of here."  So up to a ward I went, but by now I was ravenous and had had nothing to eat.  It was too late for a meal, but a very kind nurse gave me some snacks that she purchased from a vending machine.

A quick inspection in the morning showed I was hooked up to a saline drip IV and a catheter, and had some sort of drain in the lower abdomen.  The drain was removed, and I soon was able to take a series of walks around the ward to stretch the legs and get some exercise.  Later in the morning I received instructions on how to deal with and live with the catheter, and was released with a follow-up appointment for 6 days time at Dr. Hu's office.

The next week went in what was in the early days a pain-filled blur.  I managed the catheter reasonably well, emptying the bag at the appropriate times and only once caught it on something.  (It only happens once!  The pain is a great teacher.)  I discovered it was best to put the bag in a bucket by the side of the bed at night, and place a pillow against my back to stop any turning in my sleep.  During the day I would strap a small bag onto my leg and connect to the catheter so I could go for walks and keep up the exercise.

The surgery caused my body's control of the bowel to go out of whack, and ever since I have had to keep a close eye for the nearest available bathroom.  From what had been a normal pattern of 1-2 visits a day, suddenly it was 8-10 visits that were terribly urgent.  I learned later that this was an unappreciated side effect - certainly my surgeon did not refer to it before the operation, but he did a few years later when he wrote a study on robotic surgery and its unanticipated effects on continence.  "Never pass a bathroom without passing!" became my mantra.

At last I had my appointment with Dr. Hu, but humiliation came when a nurse emptied the catheter bag and then used the catheter line to put a litre of water back in my bladder.  At that point she removed the catheter and I had to hold everything by willpower alone.  Next I had to demonstrate that I could start and stop on demand.  I passed!  Then Dr. Hu advised me on maintenance issues and asked me to have a PSA test a month later because he had revised my Gleeson score to 4+4=8.  (Uh-oh!  I might not have had that surgery at GS 8...)

Another week or so followed as I worked on kegel exercises and dealt with new realities.  Heavy lifting was out for a good while, but every sneeze or cough became a moment of leakage.  (Control was progressive: I had immediate control in the mornings, then it took a month or so to have it through to about 3.00 pm, and it was only after a few months more that I had full control through the entire day.  But not always...)

Finally it was time to return to work.  I was pretty happy with myself for the shape I was in after the surgery.  It took a little while to learn to pace myself back in the parish, as tiredness would lead to mishaps with the personal plumbing.  All in all, things were good.  The cancer was gone and all I needed to do to confirm it was a PSA test.