Men and the Cancer Boogey Man
I’ve had some time recently to think about many of the things that I do in my medical practice and have begun to wonder just exactly how beneficial they are. The more I looked into it, the more distressing it was. It seems I have been guilty of overselling many of the products we medical doctors sell. And it’s not just to the gullible; it’s also to some smart, educated people as well.
Yesterday I went to watch a football game at the house of my neighbor and friend Stephen. Stephen is a 50 something-year-old college-educated information technology specialist who is very well read on many topics including health care. He asked me how my book was going and I told him I’d become a bit bogged down in details and seemed to be having a hard time constructing my message in terms that the “average Joe” could understand. We talked about other things, including football, for a while and then he said, sort of in passing, “Yeah, I need to make an appointment with my doctor.” “Why?” I asked. “Oh, I need to get my prostate checked — that sort of thing.” I usually try not to get into healthcare matters with my friends. If anything, it makes me seem dull and boring – always talking about work. This time, however, I was intrigued. Here was a highly educated man who was going to go get his prostate “checked.” Of course, by “checked” we usually mean a blood test for PSA (prostate specific antigen) and a “DRE” (digital rectal exam).” Why do you want to do that?” I asked. “Well, I was told you were supposed to get that done.” “By whom?” I asked? “Oh, I don’t know, everybody says so.”
I didn’t push on with that conversation too much longer with Stephen. I sort of knew which way it was going to go. I did take a few minutes to relay some “facts” about prostate screening to him and I think he is taking them under advisement. What the encounter enlightened me to, though, was how fearful we are of cancer. Almost everyone has a friend or family member who has died “from cancer.” Often they went through terrible rounds of chemotherapy and/or surgery and/or radiation and then ended up dying anyway. I will go into the details of prostate screening soon, but in this introductory chapter I would like to explore human nature a bit. I’m wondering why humans seem to really overestimate the benefit of some of the treatments doctors advise and underestimate the risks of pursuing such treatments. Is it all the fault of the doctors? Certainly, we must take some of the blame. I know I have been guilty of really pushing some therapies in the past only to find out, years later, that I was wrong. I’m thinking about hormone replacement therapy for women as a prime example, but also other things like weight loss drugs and many other drugs that have come to market only to be taken off later because of severe side effects. But the cancer fear factor is very easy to sell. People really don’t want to get cancer, have a huge fear that they will, and they’re pretty much willing to do almost anything to avoid it. They certainly have bought into the philosophy that catching cancer early is better, but is it really?
The concept seems simple enough – if you catch a cancer early it should be easier to either remove it or kill it. We have based almost all of our screening programs on that premise. We check out skin for moles and other “early” cancers, we do colonoscopies to catch early colon cancer, we do mammograms to catch early breast cancer, and for men, we do PSA blood tests and digital rectal exams to check for prostate cancer. All of these ideas sound great and some of them work okay but – truth be told – some are no good at all. The theory just doesn’t seem to work out. I don’t know why and I’m not sure anyone does. The number of men we have “saved” from an early death by checking PSA levels is so close to zero that we should be taking a long hard look at what we are doing. By trying to assuage people’s fear of cancer, and the nasty treatments that often go along with it, we end up over-diagnosing very mild cancers that never would have harmed a man before he died from something else. This happens very, very, often yet it gets little press time. Most patients don’t ever consider that they might fall into a perverse trap whereby in trying to avoid getting cancer (and the associated terrible treatments) they end up getting a bunch of terrible things done to them anyway.
It reminds me of when you see a deer in the road. Your immediate inclination is to swerve, but inevitably this causes more damage than if you just go straight. By swerving you take on additional risks. You go out of your lane, you run off the road, the deer jumps into you anyway. Safety experts say the wisest thing to do is to slow down in a controlled manner and, more often than not, the deer will get out of your way. If you do hit it, you have already slowed down a little bit, and at least not risked the other possibilities. If you are healthy, and you walk into the doctor’s office and get your prostate checked, you could be opening yourself up a whole bunch of problems you never even knew existed.
But why wouldn’t you want to know about cancer? Most people do say, “If I had it, I would want to know as soon as possible, and get it taken care of.” Unfortunately, the “get it taken care of” part is a very rough road. Even more importantly, we now know that it probably doesn’t change your eventual outcome. In fact, it doesn’t even delay that outcome! There seem to be many varieties of prostate cancer. There is certainly one type, which is very benign, and that almost all men will eventually get if they live long enough. A “benign cancer” may sound like an oxymoron, but they would truly be non-harmful if we just looked the other way. Once the evil “C” word comes out, however, it’s almost impossible to do.
Autopsies performed on very elderly males who die from other causes almost always discover prostate cancer of some sort. I’m talking about more than 80% of those over 80 and the percentage increases with age. These deceased men never knew they had prostate cancer and it never caused them any pain, disability or loss of sleep. Had they been tested, years before their death, they most certainly would have fallen into our medical system and received some type of probably injurious care. Now that we have all of these new tests, everyone seems to want to get one. The insurance companies and hospitals sponsor “prostate checks.” Bob Dole, football players and other celebrities exhort you to “get checked and save your life.”
Part of this comes from self-fulfilling prophecies. Consider two men who both have prostate cancer of a low-grade. One of them gets a check and one doesn’t creating two vastly different scenarios. Patient One ends up having some surgery and/or radiation, does fairly well (except for the more than half who will be incontinent and the almost three quarters who will have impotence issues). He then lives for many more years all the while “knowing” that the prostate surgery or radiation saved his life. Having gone through all the pain of treatment, he absolutely has to believe that is true. If he somehow begins to doubt his decision it will come to no good, especially if his quality of life is less because he is always wetting his pants and can’t have sex with his wife.
The other patient doesn’t get checked and lives another 10 years in blissful ignorance before, all of a sudden, he does have trouble urinating or the prostate cancer has spread somewhere else (to his bones for example). He then gets chastised by the medical establishment, his wife and all of his friends who have been checked for not having been tested. The irony is he will now get treated with similar interventions and end up living just as long as patient number one who started down the cancer road 10 years ago. The only difference was he had another 10 years of thinking of himself as normal and not as a “cancer patient.” Oh, yes, he wasn’t wetting his pants either and he was still making love with his wife!
We doctors all had really high hopes when these screening tests came out that we would be able to catch cancers early, do some minimally invasive treatments and then save a lot of lives. Unfortunately, all the wonderful theories in the world don’t amount to a hill of beans if you do them for 10 to 20 years and you just aren’t saving any lives. That’s what’s happened with PSA screening as well as digital rectal screening. The purists will argue that we do save a couple of lives by doing all of the screening and I’m not completely unwilling to believe it. But, the numbers are huge and they really need to be balanced by all the harm that is caused to the patients who really don’t need treatment. The problem doctors have with an individual patient is deciding what to do. As an individual patient, you don’t really care about statistics; you only care if it happens to you or not. Here’s where I can help you out. I want to provide some information so that you can make an informed decision and understand that the risks of getting this test are really pretty high. It’s rarely sold to you in this manner. It would take 20-30 minutes to have this conversation with every male patient. I know, because I do it. I don’t get a single nickel in reimbursement for having that discussion. Worse, since most of my patients end up not getting the test, I probably lose quite a bit of money. Many follow-up visits would be scheduled due to the false positive results that would occur if I did test. It’s probably going to put me out of business eventually but it’s the right thing to do.
When my neighbor Stephen said “I was told” that you should get your prostate checked who was “telling” him? There are many authorities who do recommend prostate screening. Unfortunately, in my opinion, most of them have some sort of incentive to do so. I won’t go so far as to say that they are being unethical; I’m just saying that it is often in their best interests to do the screening. It’s simply human nature. In addition, I am almost positive that they sincerely, devoutly believe that they are doing the right thing. When I look at it from what I believe to be a more objective viewpoint, however, I come to the exact opposite conclusion.
Some of the bigger groups are coming to similar conclusions but the word is leaking out slowly. Here’s a quote from the webpage of the American Cancer Society:
Interim results from a study done in the United States found that annual screening with PSA and DRE (Digital Rectal Exam) detected more prostate cancers, but it did not lower the death rate from prostate cancer. A European study did find a lower risk of death from prostate cancer with PSA screening (done about once every 4 years), but the researchers estimated that about 1,400 men would need to be screened (and 48 treated) in order to prevent one death from prostate cancer. Neither of these studies has shown that PSA screening helps men live longer (lowered the overall death rate). i
I found it quite interesting that we doctors in America usually “pooh-pooh” the results from European studies and want to have our own to be sure that the data is accurate. In this case, however, the study done in the United States couldn’t show any benefit at all for prostate testing. The best they could do was “torture” the data from the European study to show that 47of 48 men went through a living hell of prostate cancer treatment yet didn’t live any longer. For those 47 who got treated but eventually got NO benefit, their lives were much, much worse than if they had never been treated. And for every 29 men I screen, one is going to test positive. Yet I have to screen 1,400 times to “save” one man. What type of odds are those? 47 out of 48 that this won’t do you any good? And only 1 in 1,400 that it might save your life. And that’s if you are in Europe – we couldn’t prove it at all in the USA.
Yet, in my experience, almost every single man diagnosed with prostate cancer ends up going through the whole rigmarole. Why do they do it? Why aren’t they willing to “watch and wait”? (The technical term is also called “watchful waiting” or, more recently, “active surveillance.”) There have been few studies comparing “watchful waiting” to “standard treatment”). I think it’s because once you have CANCER in your system you simply have to do something about it. Don’t you think you might be better off not knowing? It’s a tough sell convincing someone to remain ignorant, but least for now, that’s my conclusion.
I do give the American Cancer Society credit for jumping into this fray. They now state clearly:
“The American Cancer Society does not support routine testing for prostate cancer at this time”5
The American Cancer Society, in general, is made up of volunteers. Many of them have had cancer, had members of their family or friends with cancer etc. Often people with such a close connection can still have skewed viewpoints which might lean toward more aggressive actions but at least they are not benefiting financially. If, however, you look at a group of individuals who do benefit financially from an increased number of men being diagnosed with prostate cancer, we not surprisingly find them coming to different conclusions.
AUA COUNTERS MAINSTREAM RECOMMENDATIONS WITH NEW BEST PRACTICE STATEMENT ON PROSTATE-SPECIFIC ANTIGEN TESTING ii
The “AUA” is the American Urological Association. They are the specialists (urologists) who perform prostate examinations and prostate surgeries including total prostatectomies. Many of them have invested lots of time and money into high-tech methods of removing the prostate from men diagnosed with prostate cancer. I am sure most of them believe that they are saving lives. I also know that they make at least four times as much money as I do! Do you think they might have an incentive to recommend prostate testing? Of course they are not the ones who would ordinarily order a PSA test. Usually that would be me – the primary care guy. Now if I go off and give advice exactly the opposite of these high powered specialists, and then my patient gets prostate cancer, do you think one of those urologists might testify against me as an expert witness? To quote a certain currently popular politician, “YOU BETCHA!”
Human nature often isn’t that difficult to understand. If you go to insurance agents they will want to sell you some insurance. Sure, they make a little bit of a commission but they probably really believe they are doing you a good deed. If you take your car to the mechanics once a month, you can almost be sure that they will find something to do to your car. Doctors really aren’t any different. They really want to help you. They want you better, faster, leaner and more aerodynamic. If you show up at my office, you must want something. You didn’t just come to chat did you? If I don’t do anything to you – if I don’t order any tests, don’t stick my finger up your butt, don’t at least poke and prod a little bit – then why did you bother coming to see me? This is the roadblock I run into on a daily basis. It’s slightly easier to explain things that don’t seem so scary. For example, someone who has very minimally high blood pressure usually doesn’t want to take a pill. And since, when I look at the data, I’m hard-pressed to recommend it to them; we mutually conclude that the small risk of NOT starting a pill is worth avoiding the significant risk that the pill might cause some problems. Somehow that’s easier for people to understand. They are not as afraid of heart attacks and strokes as they are of prostate cancer (or breast cancer etc.). To me, however, since the treatments for cancer are so much more brutal, it’s even more important to avoid falling into the trap of over-treatment. I’m approaching this without regard to cost. I’m looking at it only from the point of view of avoiding harm which is what almost all doctors promise in various versions of oaths they take.
“Primum Non Nocere”
is Latin for “First cause no HARM.” I think we doctors need to really reassert that oath on a daily basis and I hope that by reading this book you can help some of them do so.
Notes: The autopsy data for prostate cancer comes from various sources but it has been shown that there is a much higher incidence of cancer than there is of cancer deaths. That leads to the conclusion that plenty of men live much of their lives with cancer without ever knowing about it.