I’m a 70-year-old man with prostate cancer. I will be undergoing a procedure called brachytherapy in a few weeks. I am writing this post, and future ones (edit: 9 so far), to document my experience, partly in the hope that it will educate patients, but especially in the hope it will help doctors do a better job dealing with patients. If you’re a doctor who thinks M.D. stands for “Me, deity,” think again. You screw up a lot. I should say at the outset, that I have no reason to believe that any of the doctors listed here are lacking in professional skill or do not have my interests at heart, as they see them. My complaints are primarily with the poor communication and seeming paternalistic attitude and just plain bad organization on the part of doctors, hospitals, and their medical groups and personnel.
For me it began with a routine annual physical. I’m remarkably healthy for a man my age – on the low/desirable range for weight, blood pressure, and cholesterol. I take no medicines – prescription or non-prescription. I’m a runner and lead an active lifestyle. I passed everything in my physical with flying colors except for the blood test. I had a high PSA score, 4.9. PSA is Prostate Specific Antigen, something produced by all prostates, but especially by cancerous cells. 4.0 is considered the top of the normal range (although I’ve seen it listed as up to 5.5 for someone in my age group), so I was only a little over that. My family doctor, Dr. M, asked me if I wanted to see a urologist, I asked him if I should and he said yes. He was concerned not just with the high reading, but also with its “velocity.” That is, I’d had a low reading of only 0.9 on my PSA in 2011. A change that great in only six years was considered significant to him. I hadn’t been with Dr. M very long (because my previous long-time family doctor left his practice), but I trusted him. He is a caring, up-to-date doctor and is an example of what doctors do right.
I’m no doctor, but I’m well-educated (law degree and lots of science in college as a math major). I was well aware that there is a controversy about PSA tests. Statistics have shown that a PSA reading alone may not be a good indication that treatment of any kind is needed. Men who do not get treated have the same longevity statistics as those who do. I had no symptoms other than the PSA reading. I suggested that maybe I should wait a couple of months and test again. He said that was too long and I should see a urologist promptly. He did not recommend a specific urologist, so I looked up local urologists online. Fortunately, I have good insurance and live in an area with a good selection of top doctors. I examined the education and experience of a number of them and chose Dr. X at Palo Alto Medical Foundation (PAMF), a preferred provider in my PPO insurance plan. The earliest appointment I could get was five weeks away. This was perhaps the first sign of trouble, the inability of the patient to see a specialist promptly.
Two days before my appointment, I tore my left Achilles tendon while running. (This sounds irrelevant, but it’s not as you will see). The morning of my appointment I got a call from PAMF telling me that Dr. X had been called in to do emergency surgery so I would be seeing Dr. A. This was irritating. On paper, Dr. A seems to be just as qualified as Dr. X both in terms of training and experience. I was not concerned about Dr. A, but I asked if I could just see Dr. X in a day or two since I had researched him and felt comfortable with my choice. The voice on the phone said no, I’d have to start over with a new appointment, which would be at least another month away. Of course, the same thing could happen the next time, and Dr. M had recommended I see a urologist promptly, so I agreed to see Dr. A.
I arrived at the clinic and limped in. My torn Achilles was really killing me. I almost needed crutches. When I checked in, the receptionist at the urology desk acted confused because I had not been referred by a PAMF family doctor. Dr. M was in a different medical group. She acted like I would have to do that, but finally just handed me all the usual forms – medical history, insurance, etc. When I gave them back she said she checked and I didn’t have insurance. This was wrong since I had just seen a specialist there (ENT for minor tinnitus) earlier that year and there had been no problem with the insurance. I showed her my insurance card again and she asked for my $20 co-pay. I handed her my credit card and she said their computer was not working so I’d have to pay cash. Really? What kind of a place was I going to? They shuffle me off from the doctor I’d chosen to another one and then can’t find my insurance and can’t even take a credit card.
So far none of this has been a major mistake, but it is very unsettling to see how patients have little choice about anything. The medical establishment, including doctors, insurance companies, and even receptionists, determine what is to happen to you. This story is continued in Part 2.