You reach a certain age and all your friends are getting sick, going to lots of doctors, having lots of tests, and taking lots of medicine. No surprise there.
The surprise is how many of your friends tell you that their doctors have made glaring errors and that the tests and treatments have caused them more harm than good. And surprising also that often it is the best doctors at the most high tech places who seem to make the most egregious errors.
The problem is that too many doctors have gotten into the habit of treating lab tests, not patients. And doctors have become super-specialized, each one focusing only on one specific organ system and the specIfic meds used to treat it. Too often, there is no one doctor coordinating an overall plan of medical care. Lots of tests, lots of procedures, and lots of interacting meds are ordered in a haphazard way that in aggregate may cause serious complications or even death.
Not very long ago, I wrote a blog called "Why Are Medical Mistakes Our Third Leading Cause of Death?"
I described the particularly disorganized and dangerous treatments received by a friend with lung cancer. His doctors kept ordering unnecessary tests and treatments that seemed likely to kill him even before his disease could. Paradoxically, they were all smart; highly trained; worked at esteemed hospitals; and used the latest in high tech testing and treatment. They were doing dangerous things because they didn't really know theit patient and all the other treatments he was getting and also lacked common sense and good clinical judgment. Excessive dependence on high tech tools had made them bad doctors.
Today's blog tells a tale of medical misadventure that would be hysterically funny were it not so scary an example of our totally screwed up medical system. It is told by the patient, who also happens to be a doctor. She has chosen to remain anonymous so as not to embarrass the doctors who screwed up her care.
When I was a medical school we called rare diseases zebras and we learned a lot about them. But we were advised to think of horses, not zebras, when we heard the sound of hoof-beats coming down Main Street. Unfortunately, doctors often prefer hunting down zebras- finding the exotic is the exciting part of medicine- what gives TV shows like House their dramatic appeal.
Chasing zebras can make for good drama and bad medicine. My recent terrifying experience as a patient taught me that doctors can lose their simple common sense when they play with high-tech toys. A splintered medical system leads to misassumptions, miscommunications, misdiagnosis and mistakes that tend to reinforce one another rather than self-correcting.
A few months ago, I went to see my primary care physician for a lump in an unusual location- between my legs, near my right buttock, just where the horn of my bike saddle presses against my bottom.
Of note, I was riding my bike about 150-200 miles per week and sometimes 100 miles in one day. I told my PCP that the lump was painless and even made bicycling more comfortable, providing a little cushion.
My PCP did not know what to make of the lump. She didn't arrive at the most obvious and logical conclusion that the lump might have arisen from irritation and scar tissue caused by many hours on an uncomfortable bike saddle. Instead, she did what doctors do- she covered her ass by thoroughly working up mine with every conceivable test.
She sent me first for a fine needle biopsy. We expected to find a benign and harmless collection of fat cells, a 'lipoma', and that would be the end of it. That's not how it turned out.
Because the pathologist saw cells that puzzled her, she sent the slides for a second opinion to one of the top five medical centers in the country. Two weeks later, only after nudging from me to get the results, the diagnosis came back as a possibly quite invasive cancer- a rare angiomyxoma that has been reported only 200 times in the literature. You could call this a two headed zebra. I next had an MRI which showed that the supposed cancer was 4cm x2cm.
Both pathologists and the Tumor Board (a multidisciplinary group of specialists) at the Medical Center recommended I have a wide excision with clear margins- an uncomfortable and potentially disfiguring procedure. They seemed to have lost track of the facts that I was a biker and that the slides contained only a few cells that looked suspicious.
My PCP referred me to a highly regarded gynecological surgeon to discuss surgical options. He worried about bone involvement and outlined a radical surgery that would also require extensive reconstruction. He would have no way of testing to see if he was getting clean margins during the surgery and would just take out everything he could without producing too much disfigurement. He said that his job of removing tissue was relatively easy, it was the reconstructive surgeon who would have the more difficult job of putting me back together again. I was also told that I should not wait too long to get surgery because the tumor could spread and that he wasn't sure he could spare my clitoris.He wrote in my chart that I had a vulvar sarcoma- an upgraded zebra.
I told the surgeon that I didn't think the tumor showed any signs of involving my vulva and that no one before had told me it was a sarcoma. I had not been prepared for anything like his radical approach, but he persisted in asking me to sign papers and schedule an appointment for surgery. I walked out of the office feeling horrified that my life as I had known it was ending.
Fortunately, a PET scan showed no bone involvement and that the lump was not very metabolically active.
But when I met with the reconstructive surgeon, he made me sign a non-liability waiver and described a procedure involving possible skin grafts, or skin flaps, and a 2 week confinement to bed on my side with a catheter. I asked why the catheter and was told he didn't trust a patient to urinate without infecting the area. He said the recovery period was extremely painful.
I left this visit even more horrified and confused. Even though my PET scan looked pretty good, my much esteemed surgeons were ready, even eager, to cut me up. They seemed to ignore whatever evidence did not confirm their diagnoses.
I wisely decided to get a second opinion before accepting surgery. My PCP recommended a top ranked Cancer Center in a faraway city. Rather than having to wait many weeks for an appointment, I was scheduled within a week. This surgeon was very reassuring telling me that even if I had an angiomyxoma, it was slow growing and we had time to wait and watch. She also said she didn't understand how the diagnosis could be made on the basis of so few cells.
The review of my records also showed that I had a smaller lump on my left side in a similar location, which would have been almost statistically impossible for an angiomyxoma.
A CT scan and core biopsy made clear I did not have an angiomyxoma or any of its close relatives. They still did not know what I had and did not suggest that my lump might be related to cycling.
At this point, I went to the Internet and began to research my case on my own, something I very much regret not having done from the beginning. I started researching conditions that afflict cyclists and quickly found one called 'cycler's node'. This is the horse, not the zebra.
I sent an article describing cycler's node to my PCP, telling her I was not going to have surgery and that I thought the lump was my butt's reaction to seat irritation. She disagreed and said I should still go ahead and have the node removed. I told her my different plan- to stay off my saddle for 6 to 8 weeks and see what happened. I discussed this plan with my prospective surgeon at the second Cancer Center and she endorsed it wholeheartedly. After about six weeks I could no longer feel the node.
The second Cancer Center wanted me to get a repeat MRI. Because it was located in another state, I had the test done at the Medical Center that had originally given me the diagnoses of angiomyxoma and vulvar sarcoma. The report was amazing reading. No more lump, no cancer, and the statement that surgery (which of course I never had) had been a success.
Our medical system can live in an alternate reality, ignoring the simple fact that a lump on the rear end of a biker is usually just a lump. You can get into trouble if your doctor is looking for zebras in the bike lane.
Thanks Dr X. A humorous aside -- my 10-year-old twins overheard my wife and me discussing that you were being tested for your lump and in the middle of the conversation shouted out their diagnosis 'Bikers' Butt'. No high tech, no medical training, no zebras -- just simple common sense by kids who live in a neighborhood where lots of people bike.
Medical schools select for the best and the brightest college graduates; give them 8 or more years of intensive training; and provide them with amazingly high powered scientific probes. There are many terrific doctors who remain able to retain good judgement and a focus on the whole patient, not just the test result. But too many doctors have come to know everything about nothing and have lost their common sense. Medical technology run amok leads to unnecessary tests and treatments, medical nistakes, and patient harm.
The solutions are clear. More primary care docs; fewer specialists. More education about the risks of testing and treatment; less hype about their benefits. More reimbursement for time spent talking to patients; less for testing, meds, and procedures. Patients who inform themselves and question their doctors, rather than patients who accept recommendations passively. Patients suffer when the science of medicine overwhelms its art.
Every doctor and every patient should see the hilariously funny, black comedy "The Hospital". This one movie is worth a thousand blogs in describing our medical mayhem.