When Conservative Care Isn’t Conservative: Active Surveillance for Prostate Cancer

Note: Yes, it’s Christmas Eve and most of you are probably enjoying family festivities this evening, but I feel it’s important to stick to a schedule, and I try to always publish on Sunday evening. So Happy Holidays and read on!

I admit, I have my personal perspective on prostate cancer, beginning in 1957 when my dad, my dad’s mother, and I drove to Janesville, Wisconsin, to visit her brother, my dad’s uncle. He was dying from prostate cancer. In those days, many people who were sick died at home. Clem was in a hospital bed at the west end of his large living room. The sun setting around him seemed almost like a halo.

Smell is our strongest sense. My first impression and the one that remains with me to this day, over 60 years later, was the odor in the room. The prostate cancer had chewed its way through Clem’s body and through the skin on his back, so he had weeping ulcers of prostate cancer combined with gangrene on his back. We spent a few days there and shortly after we returned home, Clem passed away.

My own personal experience with prostate cancer began when I was 57 years old and had a PSA of 3.48. Since these results were at the upper limits of normal, I retested my PSA in August. My PSA had made a remarkable jump up to 7.8. I had biopsies done and my Gleason score was a 3+4. This is the highest Gleason score associated with a so-called somewhat favorable outcome.

Dr. Gleason was a pathologist who developed the Gleason score. The score reports the microscopic results from observing two types of cell counts which give an indication of an anticipated prostate cancer course. The Gleason score consists of two numbers, each with a possibility of one through five. The scores are added so that 1+1 = 2, 3+3 = 6, 3+4 = 7, and 5+5 = 10. The higher the sum of the two numbers, the more aggressive the prostate cancer. The lowest score, a 2, is considered benign. A 7 is the only score which can indicate two possible approaches, something to watch or something to treat.

The first Gleason number is derived from the most common cell type seen in the biopsy under the microscope. In other words, it indicates the cell most common in the prostate gland and an assessment can be made of the cancer cell’s aggressiveness. A score of 1 indicates a benign cancer cell, a score of 3 indicates the cancer cell is relatively indolent (lazy), and a score of 5 indicates an aggressive cancer. The second number in the Gleason score indicates the largest group of cells found in the biopsy besides the the initial kind of cell identified in the first number of the Gleason score.

In addition to the Gleason score on the microscopic exam there is also the presence or absence of spread to the lymphatic tissue or neural tissue. This spread, if present, indicates a more aggressive cancer. In my case, although I did not have lymphatic spread, I did have neural spread. So, for me, the easy choice was a radical prostatectomy. My surgery was 17 years ago. Luckily my PSA levels have continued to be nonexistent in spite of the neurologic involvement. I’m lucky and I know it.

In the last 20 years, I have practiced in three different locations. The doctors before me in these clinics appeared to be following the recommendation made about 20 years ago not to aggressively pursue the diagnosis of prostate cancer. In other words, we were to limit PSA testing because it has been deemed unreliable and can be responsible for over-diagnosing prostate cancer, causing unnecessary treatment. After the protocol to no longer do PSA tests had been in practice for a number of years, I remember very well the chatter about it. “Oh, my goodness our prostate cancer rate is coming down.” Well yes, of course. When you stop testing (looking) for prostate cancer, you will find it less often.

A few years later we discovered that not only did the prostate cancer rate climb radically, but the prostate cancers diagnosed were found at a more advanced stage. Of course, this is not surprising when you stop testing for prostate cancer so you stop finding it.

As a physician, my experience with active surveillance in my patients has not been a course I would recommend. I don’t recommend active surveillance to any of my patients. However, there are patients who prefer to go to urologists who do at least indicate they are doing active surveillance. The active surveillance protocols today recommend repeated testing at short intervals, but I was finding my patients had not had any real surveillance after their PSA tests.

In one town I practiced, many men over 70 hadn’t been given PSA tests at all. One man was 55 years old and had supposedly been “actively surveilled” for 10 years. Suddenly his prostate cancer went from benign biopsies to a Gleason 8 and his cancer had become widely metastatic. So, he went from a curable cancer to an incurable cancer while he was being “actively surveilled.”

Alternative options to a radical prostatectomy include a new kind of seed radiation which is inserted through the perineum rather than the rectum. I saw a 50-year old man who was diagnosed with an aggressive prostate cancer. He was offered this new seed radiation treatment. He has had no end of problems with this treatment. The problem with radiation seeds is they radiate forever. They don’t stop when the prostate cancer is gone. I stongly suspect many patients never get the full story of the various kinds of bad outcomes that can occur from supposedly less invasive treatments than the radical prostatectomy.

There are many more stories like this one. True, my stories are just one doctor’s experience, but I can’t imagine that I am the only doctor finding these problems.

From my own personal experience and the experience of my patients, my question then becomes how many men must die in the name of the conservative therapy known as active surveillance?

A lot of the so-called problems of the radical prostatectomy don’t need to occur. I found a doctor who said he would do a low abdominal incision and would spare my nerves on one side. I kept on looking for a urologist. I found a doctor who said he would spare my nerves on both sides and do a laparoscopic robotic surgery. At that time, laparoscopic surgery was relatively new, but this physician was experienced in this type of surgery.

My recommendation would be that if you can possibly have a radical prostatectomy, you should do it and you should do it with a urologist who has experience with laparoscopic robotic surgery, one who can spare the nerves on both sides. If you find a doctor who says he has a new procedure, find out exactly how many of these procedures he or she has done. And locate patients who have had such a procedure and ask about their outcomes.

Today it is easy to research your medical condition and possible treatments on the web. But the complexity of the active surveillance approach, promoted as avoiding radical intervention with what will become repeated PSA testing, repeated prostate biopsies, and repeated MRIs, possibly for years, amounts to a large amount of a patient’s time and money in the name of “low risk” prostate cancer. And that’s only if they really have a physician who practices active surveillance. A radical prostatectomy, when indicated by a marginal Gleason score, ends the hovering surveillance several times a year and can be replaced by a PSA test from year to year.

If you do opt for active surveillance of your prostate cancer, be sure you are checked often as needed to monitor the development of your cancer. Active surveillance is appropriate for a relatively small percentage of patients and patients need to know how many tests and rechecks to expect. But also consider that the practice of active surveillance with prostate cancer becomes a handy merry-go-round of cash flow for clinics and hospitals. You need to think about whether you want to be over and done with the developing cancer or you want to be sure you are indeed checked often for the progress of your prostate cancer.

Think about it.