My Kidney Cancer Taught Me That Patients Aren't Consumers
Most normal people, when told they have kidney cancer, worry about what that means for their long-term health. I'm not normal. When I discovered I had a 1cm tumor growing on my left kidney, I wondered: 'How much is this going to cost me?'
My lack of normality results in part from my profession – I'm a physician and behavioral scientist who believes that every experience is an excuse to conduct research. I'm also a famously discerning consumer (my euphemism for being a cheapskate). So when I realized I had a kidney mass that needed medical attention, I made sure to figure out how much every test and treatment would cost me. I found myself trying to live up to what free market enthusiasts say we need in this country – patients who bring consumer savviness to the medical marketplace. I was going to scrutinize my medical alternatives like a five-star chef at an organic farmer's market, squeezing the metaphorical offerings to determine which goods are worth which prices.
But I quickly discovered that no patient is a decision- making island, and therefore healthcare consumerism will never work as well as its enthusiasts hope.
My cancer journey began when I went to the bathroom and noticed bright red urine. I remember feeling simultaneously shocked because my urine was full of blood and disappointed that I hadn't felt pain that would signal a benign problem like kidney stones. 'Shit,' I thought to myself, 'could I have cancer?'
A few days later, a CT scan revealed a 1cm mass hanging off the lower pole of my left kidney. My urologist explained that the kidney mass had nothing to do with my bloody urine: 'It's too small and too far away from the center of your kidney to account for hematuria.' 'Then what could have caused me to bleed?' I asked. 'Probably a vein in your prostate,' he answered. 'As you can see,' he said, pointing to the CT image which he pulled up on his computer screen, 'your prostate is quite large.'
As for the kidney mass, the urologist confirmed that it was probably cancerous: 'But it's such a small size, we have a 98% chance of curing it. We just have to decide what treatment approach you like best.'
One treatment alternative was cryotherapy. With this procedure, an interventional radiologist would stick a needle in my back and inject the tumor with freezing liquid. 'The main advantage of cryotherapy is its gentility,' he told me. 'You'll be playing tennis in a week', no small consideration for an avid exerciser like me. The disadvantages? 'Well, they will biopsy the mass before freezing it, but there is no guarantee the biopsy will yield diagnosable tissue, so we might never know whether the lesion they zap is cancerous or benign.' There was also a chance the freezing wouldn't kill all the tumor cells, an 8-10% likelihood, in fact, that the tumor would grow back over the next five years and require further treatment. Finally, to monitor for such a recurrence, I would need CT or MRI scans of my kidney 3, 6, 9, and 12 months after the treatment, plus annually for the next five years.
Determined to be a savvy shopper, I did some quick math. I had already paid $45 to see my primary care doctor, another $45 to see the urologist, and another $150 for the CT scan. (These payments are what insurance companies call co-pays. Although they usually cover only a small portion of overall healthcare expenses, studies have nevertheless shown that even modest co-pays are enough to make many patients think twice about seeking out medical interventions.) Now the urologist was recommending 8 more scans, each costing $150; plus 8 follow-up appointments at $45 a pop, plus parking; plus the $450 cost of the kidney freezing procedure, . . . I could see this adding up to a decent chunk of change.
But I had a second alternative – robotic, laparoscopic surgery. The urologist would make four incisions in my belly, and through a series of cameras and instruments, remove the mass. 'The advantage of surgery,' he told me 'is that we will remove the entire mass with clean margins. It will be gone, with only a 2% chance of recurrence over the next 5 years.' Because the procedure was more definitive, I would only need follow-up at one and five years. Two scans instead of eight, saving me close to $1200. But the surgery had a major downside because the urologist would cut open my belly, and I'd have to go six weeks without vigorous exercise while my tissues healed.
I decided to get surgery, to avoid all the additional imaging tests, tests that would cost not only money but time.
So far, my decision-making was a textbook example of how patients as consumers should make decisions. I learned about my treatment alternatives, their medical risks and benefits, as well as their financial costs, and made the choice that fit my values. It was only after returning to the urologist's office, two weeks after surgery, that I realized that this textbook was missing a chapter on the powerful role that physicians play in patients' medical decisions.
After appropriate pleasantries, the urologist showed me the pathology report confirming that my mass was a renal cell cancer, a small one 'with clean margins,' meaning that he had cut out enough healthy tissue surrounding the tumor to be confident that no cancer cells remained.
He then went over the follow-up plan, which I was surprised to discover had changed significantly since we last discussed it. 'Now the NCCN guidelines,' he told me, 'say that we don't need to do any follow-up imaging for someone with a tumor as small as yours.' The NCCN is the National Cancer Center Network, a professional organization whose clinical practice guidelines hold a lot of weight with physicians, because they represent a thorough assessment of the scientific evidence. 'But in your case,' he went on, 'you are so much younger and healthier than average, I would want to get a follow-up scan in three months, then annually after that for the next five years.'
Huh? Before the surgery he told me that I would only need follow-up scans at 1 and 5 years, a factor that had influenced my choice of the procedure. Now he was telling me that I should receive six more scans. Surprised by this new course of action, I pushed back: 'How fast do renal cell cancers grow?' 'Usually about 0.6cm per year,' he answered. 'Then why do we need annual scans?' 'Recurrent tumors usually grow faster than primary cancers,' he answered, meaning that the 0.6cm figure he had given me five seconds earlier hadn't been an answer to the question I had asked. 'Look,' he said gently, 'we can have fewer scans if you want, but I hate to take the chance of missing a treatable recurrence in a young guy like you.' I was 51 at time, whereas the average age of someone diagnosed with renal cell cancer is 64. 'If you were older, with a bunch of competing health problems, I wouldn't be so worried. Most of my older patients with tumors like yours end up dying of other diseases, like heart problems, so getting frequent scans in them doesn't make sense.'
Earlier in the visit, he had remarked upon how little fat he'd seen around my kidneys during the operation, and had commented on how quickly I was recovering from the procedure. My relative youth and healthiness were seemingly causing him to push for a more aggressive follow-up. He reiterated his recommendation that I receive an MRI in 3 months. I flashed a skeptical look in his direction, so he quickly elaborated: 'I just saw a patient at the three month follow-up today who already had a recurrence. Now he had a different tumor than yours,' (which seems like a pretty relevant fact to me), 'but I have seen too many bad cases in my career, patients whose tumors we discovered too late. Better safe than sorry.'
Hard to argue against the logic of 'better safe than sorry.' But in my case that logic led down a path of potentially unnecessary tests and procedures, all of which cost money—not only to me, the patient forking over a co-pay, but also to the rest of the healthcare system. And of course, just two weeks earlier I had chosen to have my cancer removed surgically to avoid all those follow-up tests.
In most consumer markets, individual consumers decide what products they want to buy at which prices. My experience with kidney cancer reminded me that in medical markets, physicians often play a large role in deciding what tests or procedures individual patients will receive, with little regard for the price of such services. In such settings, it defies logic to expect patients to make the kind of discerning choices that maximize market efficiency.
We are undergoing a silent revolution in medical care in this country, with insurers and employers encouraging an increasing percent of Americans to enroll in high out-of-pocket health insurance plans. This move fhas been built on the assumption that giving patients a larger financial responsibility for the cost for their healthcare will turn them into more discerning healthcare consumers.
My experience belies that assumption. Even savvy healthcare consumers – aka patients – will have a hard time reining in healthcare spending in the face of physicians preaching an ethic of better safe than sorry.
In the end, the urologist and I compromised. I skipped the three month follow-up that he recommended but agreed to receive a scan at twelve months. I doubt that many patients would have been able to resist the recommendation for the earlier scan. Even I left the office that day wondering, worrying really, whether I had made a mistake, fretting about whether a small nexus of undetected cancer cells was silently rejoicing, knowing they had an extra window of time to draw strength from my blood. I had won a victory for medical markets and for common sense. But it left me wondering: would that victory cause me to lose the war?
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