Death from prostate cancer can be agonizingly painful. It spreads to bones, eating them away. Patients feel as if they have fractures all over their bodies. It is a sadly common disease, killing 1 in 50 men. The medical profession has for years sought a solution, tried to find a way to catch the disease in the early stages and prevent the suffering. We have failed miserably.
For a while there was hope. Over 30 years ago someone discovered a protein in the blood, the Prostate Specific Antigen, that was elevated in the blood stream of prostate cancer patients. It was high when cancers were diagnosed, went down as the cancers were treated, and then rose again when cancers recurred. It was a good marker of cancer activity. Eventually doctors thought. “What are we waiting for? Why not use the PSA test to find cancers before they spread? Let’s start testing every man and end the suffering!”
It was a great idea, or so it seemed based on the available knowledge. What no one knew at the time was how many harmless prostate cancers were present in the population, cancers that did not need to be found. Prior to PSA testing, almost all of the prostate cancers diagnosed were deadly, for these were the patients that came in for treatment. Harmless cancers were almost unheard of.
It turned out that these silent harmless cancers made up the vast majority of prostate cancers. When PSA testing became widespread these were the cancers that were most often found. To the surprise of everyone prostate cancer diagnoses increased 600%. There was an exhilaration in the medical profession as people considered how many lives they were now saving due to early diagnosis.
The exhilaration soon faded. It turned out we weren’t saving very many lives at all. The prostate cancer death rate barely budged. In spite of the 6 fold increase in diagnoses the death rate declined a pitiful 5%.
To make matters worse, we soon learned that we were doing more harm than good. As we could not (and still cannot) tell which cancers were deadly, doctors treated every cancer they found. Thousands, if not millions of men with harmless cancer cells in their prostate glands had their prostates removed. Given the extremely high incidence of long lasting complications from the surgery, such as impotence and incontinence, incredible harm was done in the effort to save lives. Most studies suggest that 50-60 men were harmed for every life saved from PSA testing.
I realized the potential for this harm early on. I never endorsed or recommended routine PSA testing for my patients. Over and over again, day after day, with patient after patient, I explained the potential harms. For nearly 2 decades patients argued with me. Some patients got angry. They told me stories of friends and family members who had died from the disease and accused me of not caring. Many left my practice, including some with whom I felt particularly close. It was not easy being a dissenting voice.
It is only in the last few years that the majority of medical societies have accepted the reality that we do not have a good screening test for prostate cancer. PSA testing is no longer recommended.
People are finally acknowledging that the law of unintended consequences once again has come into play. The desire to do good resulted in a great amount unforeseeable harm.
The lessons of the PSA test have far reaching applications. Our society has many ills that plague us, from poverty to gun violence. Debates rage in legislative halls and internet forums. The cry to “DO SOMETHING!” resonates with all of us. It is frustrating to see others suffer needlessly. We want action and we grow tired at the perceived inaction of our leaders.
The prostate cancer story serves as a reminder, we can do much harm in the pursuit of doing good. Simple solutions do not always exist, and we would be wise to proceed slowly as we search for answers.
Bart