Another Day in the Frontal Lobe (11 page)

Needless to say, I didn’t adopt this style wholesale, either, but I did appreciate the warning this surgeon left me with: if the patient isn’t crying by the time you’re done going over the consent for surgery, then you haven’t done your job. Although I don’t force an upwelling of tears from each and every patient, I agree with the spirit of the advice in that the risks of surgery have to be laid out plain, in the open, and cannot be taken lightly. And even though some patients prefer not to hear all the risks and just want to get the signing over with (worrying that if they hear too much, they’ll change their mind), I think it’s in their best interest to know everything anyway.

From a surgeon’s point of view, the last thing you want is for a patient to come back after surgery saying they had no idea they could end up with: an infection, headaches, nerve damage, a numb foot, an ugly scar, a less than perfect outcome (take your pick). The next person you’ll hear from is a lawyer. The growing cynic in me, though, says that nowadays, you may hear from a lawyer even if the patient did fully understand all the risks.

Some surgeons late into their careers grow weary of repeating the same spiel to patients, over and over again, explaining the risks, benefits, and alternatives (the standard triad) of the same procedures. One mentor of mine, a senior, big-picture kind of guy, would leave the consent process to his minions, usually the residents. The story goes that if a patient asked him directly about the risk of stroke in a procedure he specialized in, he would wave his hands while standing up to head for the door and explain: “We did have a stroke once. Years ago. Older woman. In her eighties. Lied to us about her age.” I never actually heard him say this myself, but the story was repeated so often and by so many people that I fully believed it to be true.

Some surgeons shun statistics. Others love them. Some patients want exact numbers, others couldn’t care less. The conversations, then, between a surgeon and patient can have many different flavors. In one, you could hear precise percentages and the quoting of recent scientific literature. In another, vague words such as “possible” and “unlikely” would dominate the discussion of risk. Most surgeons are not statisticians, though, and so even when detailed numbers are discussed, they may not be perfectly accurate.

Colleagues of mine wrote an interesting paper in the neurosurgical literature that exposed a common misunderstanding among neurosurgeons.
¹
  Take this situation: You have a patient with a newly diagnosed AVM of the brain, and it has never bled before. Let’s say the literature estimates a roughly 2 percent chance of AVM rupture per year, based on large population studies. How do you counsel this patient about management options?

Age, of course, would be of critical importance. If the patient is ninety years old, you would probably advise the patient to leave well enough alone. They will probably end up dying of another cause within the next few years anyway, and interventions designed to fix the AVM come with their own set of risks. Plus, the AVM may have been present, lying dormant, for decades. At age ninety, better to just live with the relatively small risk of doing nothing.

What if the patient is sixty-five years old, though, and asks you what the chances of rupture would be over the rest of his life if nothing were done? You could estimate a life span of, say, eighty-three years. He has eighteen to go. Does that mean that the chance of rupture is eighteen times 2 percent, or 36 percent? It turns out, based on a survey, that around half of the neurosurgeons felt this was the correct way to come up with the answer (the other half were all over the map). It turns out that it’s not.

Look at it this way. What if the patient is only fifteen years old? In this case, the patient could be estimated to live roughly sixty-two more years based on life expectancy tables. Does this mean the chance of bleeding over this patient’s life is sixty-two times 2 percent, or 124 percent? That makes no sense. It turns out that an accurate assessment of lifetime risk is a more complicated, logarithmic-based equation:

Risk of hemorrhage = 1 - (risk of no hemorrhage)
^{expected years of remaining life}

The real answer would be 85 percent, not 124 percent. In the case of a young person, the exact answer doesn’t really matter because any neurosurgeon would tell you that the AVM should be fixed. Regardless, the point is that counseling based on hard numbers is not as straightforward as it may seem.

I saw a patient recently who had had spine surgery performed a few years earlier by another surgeon. As can often be the case, the original reason for the surgery—advanced arthritis, or garden-variety “wear and tear” changes that can occur with age—continued to progress and she was now faced with requiring treatment, and maybe even a second operation, for a neighboring level of her spine. I knew the surgeon who performed the first operation, a highly reputable colleague, and I voiced some question as to why she wasn’t in his office instead.

“Well,
he
gave me a wound infection, so you can be sure I won’t be going back to
him
!” This sort of statement, and the vehement emotion that goes with it, worries me and raises a red flag. It might be easy for me to fall into the trap of flattery, at first (the patient specifically chose me over the other surgeon), but the realistic response should be one of caution. This is the type of patient who believes that the concepts of risk and complication are neatly and inextricably linked to another concept: blame. If something bad happens, it’s someone’s fault. There is no such thing as bad luck.

Based on the alarmist tone of her voice, I imagined that in
her
mind, the surgeon willfully smeared bacteria into the surgical site, aiming to set up an evil chain reaction leading to fever, pus, and a red, swollen incision. The truth is that infection remains (and will always remain) a risk of any surgical procedure. Although all measures are taken to bring the rate as close to zero as possible, it still hovers around 1 percent or so (or slightly higher or lower, depending on the surgical site, the circumstances, and how healthy the patient is to begin with). Surgeons feel terrible when a patient of theirs develops an infection, but they normally don’t feel guilty. While it’s true that in very rare cases, careless breaches in sterile technique are to blame, and certain individuals can be held liable, that is the very rare exception.

So, if you are the unlucky individual who happens to fall into that 1 percent because natural bacteria on your skin (the usual source) infected your wound, should you blame your surgeon? Should you call your lawyer? Should you expect someone to pay up? One reason physicians are unhappy these days is that the definition of malpractice has changed. Malpractice is no longer defined as truly negligent or improper behavior. Now, a poor outcome alone triggers claims of “malpractice.” The quality of the care may be irrelevant.

I have never been sued but I expect to be. The entire new generation of surgeons expects to be sued. Our elders tell us it’s coming; it’s just a matter of time. It doesn’t matter how good you are or how carefully you practice. For that reason, I’m always trying to figure out which of my patients might be most likely to sue me. If it’s really obvious (they gloat about the lawsuit they won against Dr. So-and-So when surgery wasn’t everything they had dreamed it would be), then I’m likely to steer clear of them and recommend definitive treatment elsewhere. Most of the time, though, it’s not so obvious, and you have to go with your gut. Unfair? Maybe. Paranoid? Not at all.

On the subject of risk, I have to include my two cents about medication. You might think that, because I am a surgeon and accustomed to “cutting people open” (as a few of my more eloquent patients have referred to it), the thought of simply prescribing a medication, or popping a pill myself, would give me no pause at all. Not so. I am a firm believer in the pithy statement: “Anything strong enough to help you is strong enough to hurt you.” No treatment, at least no worthwhile treatment, comes without risk. Even natural supplements, if you take unnaturally large amounts, can have untoward effects, which is finally starting to dawn on the public. For that matter, placebo pills have been shown to have a whole host of vague “side effects” (headaches, dizziness, stomach upset), triggered either by the mere belief that the placebo is a real drug, or purely as a coincidence.

I’ve been lucky to be relatively healthy. I’ve never taken a pain medication stronger than Tylenol or Advil, never taken an antibiotic for anything, and have never been on any prescription medications. Aside from a garden variety multivitamin and extra calcium, I don’t take anything. I’m wary of taking natural things in unnatural doses. I am amused by the burgeoning pseudo-medical chain stores that hawk supplements. My idea of maintaining a healthy diet is to make sure I sample from multiple different types of ethnic cuisine. The jury is still out on which culture has produced the best regimen for longevity, so I hedge my bets and include them all.

Surgery is visual and tangible. The risks are pretty concrete. Medications are a little more mysterious. There are plenty of medications that work wonders without us having a clear idea as to how or why they work. To me, that means that there are probably other things those drugs are doing that we may not expect. It would be unlikely for a drug to have one and only one effect on the body. That’s not how the body works. One physiological mechanism can mediate numerous different functions. One natural chemical, blocked or enhanced by a certain drug, may have dozens of different targets. Those targets are probably not all figured out yet.

For that reason, I’m not surprised when scientists discover that a seemingly innocent medication, taken for years by thousands or millions of people, is found to be associated with a slightly higher risk of something scary and unexpected: blood clots, stroke, heart attack, excessive bleeding, sudden death, weight gain. This doesn’t mean that I will shun all medication out of fear of adverse effects. I’ll take a medication when I need it, when the time comes, if the benefits clearly outweigh the risks. But I won’t expect to get something for nothing.

The thorniest medication questions arise with pregnant patients. What can you do for a pregnant woman with bad headaches or bad back pain? Is there any pain medication she can take or does she have to suffer? What if she has a seizure disorder? What antiepileptic medication is safe? What about if she gets an infection? Are antibiotics okay? The standard teaching pounded into my head was that
all
medications should be considered potentially risky, at least to the fetus. That seems a bit drastic, but not if you think about it for a second.

How would you go about doing a careful study to determine whether a medication is “safe”? You would have to recruit, say, one thousand pregnant women, early in their pregnancies, to participate in a medication trial. You’d want to pick relatively healthy nonsmoking, nondrinking women. Allow half of them to take a certain medication, and forbid the other half from touching it. Follow them through their entire pregnancies. See how their kids turn out. If 4 percent of the women on the medication have babies with birth defects, compared to only 2 percent in the other group, you’d have a nice study to publish in the medical literature and newspapers. (“Twice the risk of birth defects!” would be a great headline.) More meaningful warning labels could be put on medication bottles. This all sounds good—it sounds scientific—but who would volunteer to participate in such a study? No one. Now you can see why doctors don’t have all the answers, and probably never will.

TEN

Emotion

I very rarely cry, but when I do it’s all or nothing. I sob. And once the switch is flipped on, my eyes get red, my face gets blotchy, and it’s obvious to anyone who sees me that I had been crying, even an hour later. My pathetic appearance then triggers the question, “Why were you crying?” just at the point where I have regained composure. This risks provoking the tears all over again. I am jealous of people who can cry just a little bit, gracefully, regaining their normal flesh tone right afterward. It’s not such an ordeal for them.

I’ve cried on the job only once—but not in front of colleagues—and I’ve regretted it ever since. It wasn’t because I was yelled at (not worth crying over) or because I was exhausted and overworked (not worth it either). It was because I had to deliver a death sentence, and I let my guard down.

A young healthy man in his late twenties, just a couple years younger than I was at the time, had a seizure while taking a shower one evening. His wife heard the loud thump and ran upstairs to find her husband unconscious, limbs flailing. I met him in the ER. By that time, he had regained full consciousness and was nearly back to his normal self. A CT scan of his head showed that a small patch of brain was slightly darker than normal. We knew this probably represented a stroke, a tumor, or an infection. But why would this young healthy person have a stroke or an infection? Those diagnoses were relegated to possibilities two and three—a very remote two and three. Brain tumors are more random. Risk factors are not required, and so we felt that this diagnosis was, unfortunately, number one on the list. Another more detailed scan the following morning convinced us that our hunch was probably right. He went to the OR for a biopsy and for removal of as much of the tumor as was safe to remove.

Based on his scans, we felt that the tumor was probably on the more benign end of the spectrum. It didn’t really light up much with the intravenous contrast. The worst ones usually do. Going into the OR, we gave him the hope of a more benign tumor, and we had the same hope ourselves. We always leave an out, though, that “we can never be sure until we get a piece of it.”

The pathologists usually require a couple days to come up with a final diagnosis. The day after surgery, the attending neurosurgeon on the case left town for a meeting. As I was the resident most involved with the patient’s care, I was put in charge of looking after him and delivering the diagnosis. After a couple days had passed, I was on our usual evening rounds with the rest of the residents, and we stopped by the patient’s room to check on him. He looked great. We all said hello and I promised to return by myself at the end of our rounds after I had spoken with the chief of pathology.

I finished my work and sat down at the nurses’ station to call the pathologist. “It’s not benign,” he told me. “Definitely not benign. The entire department took a look at it and we all agreed. It’s not what we were expecting.” On the standard brain tumor grading scale of one through four, with four being the worst, this young man’s tumor was a three. The problem is, a three eventually turns into a four, and once it’s a four, life expectancy is usually measured in months rather than years. (Actually, the twos also tend to “devolve” into a more malignant grade, but it usually takes much longer.) I knew how this patient’s life was going to change—and eventually end—and now I had to go tell him.

I walked down the hallway to his room. His door was open and a few of his good friends were visiting. His wife and new baby daughter were there, too. With all the joking and laughing, the mood was festive. The patient didn’t look like a patient. Too cool to stay in his flimsy gown, he had taken it upon himself to change into his jeans, T-shirt, and baseball cap. The cap covered his scar. He shunned the hospital bed and was sitting in a chair by the window. He looked good enough to go home despite having just had brain surgery. He smiled at me and asked if I had a diagnosis for him. We sent his friends out to the hallway.

I sat down and delivered the news. I hinted at the ultimate implications of his diagnosis, but I didn’t want to hit this too hard too soon. I wanted to give him some time to digest the shock of the unexpected. I looked at his wife, his infant daughter, and at him. He nodded his head, slowly, calmly. I wanted to provide them with some hope so I started, reflexively, to enumerate all the treatments he could receive that would give him the best possible chance. I reassured him that he was young and healthy, which would put him in a more favorable category.

I felt I had done enough talking at that point, so I stopped and sat in silence, a natural invitation for questions. I looked at the three of them. His wife was starting to cry, silently.

Then, without warning, I started to cry, too, then sob, interrupting the silence. My usual calm professional demeanor had broken down. I was struck by a harsh paradox: the vision of this young vibrant family sitting with me in the present, clashing with my knowledge of biology and how this tumor was about to change their lives. I could see the future too clearly.

The patient continued to look at me, stoically, nodding his head. He exhaled audibly and then thanked me. I didn’t deserve much thanks, though. I worried that my unbridled outpouring of grief had wiped out any shred of hope. Chances are that if the surgeon is bawling, the prognosis is dismal. I calmed down, hugged his wife, and left the room, passing his friends in the hallway and looking downward to shield my face. I walked straight out to the hospital garage and drove right home.

Raymond Carver is one of my favorite authors. His minimalist style is vivid, disturbing, and memorable. After devouring all of his short stories, I was intrigued to come across a poem describing his thoughts upon receiving the fatal diagnosis of lung cancer. It gave me a sense of being on the other side of the conversation. It also made me wish he hadn’t been such a heavy smoker. He died too young. The world would have enjoyed another collection of his stories.

What the Doctor Said

By Raymond Carver

He said it doesn’t look good

he said it looks bad in fact real bad

he said I counted thirty-two of them on one lung before

I quit counting them

I said I’m glad I wouldn’t want to know

about any more being there than that

he said are you a religious man do you kneel down

in forest groves and let yourself ask for help

when you come to a waterfall

mist blowing against your face and arms

do you stop and ask for understanding at those moments

I said not yet but I intend to start today

he said I’m real sorry he said

I wish I had some other kind of news to give you

I said Amen and he said something else

I didn’t catch and not knowing what else to do

and not wanting him to have to repeat it

and me to have to fully digest it

I just looked at him

for a minute and he looked back it was then

I jumped up and shook hands with this man who’d just given me

something no one else on earth had ever given me

I may have even thanked him habit being so strong

The term “brain tumor” is a catchall term for just about any tumor that grows inside the head. In reality, only a subset of tumors arise from the brain itself. Most of the benign tumors—meningiomas—arise from the outer covering of the brain and tend to cause problems by indenting into the brain or pushing it aside. True tumors of the brain tissue itself—known as gliomas—are the most feared. These are also known as “primary” brain tumors. (Metastases, which originate from other cancers outside of the brain, such as lung cancer, are an entirely different entity.) Gliomas actually arise from the supporting glial cells of the brain rather than the neurons, or nerve cells. The most malignant form of glioma, a grade four, the glioblastoma multiforme (GBM), remains a thorn in the side of neurosurgeons. Despite sophisticated imagery, advanced operative techniques, chemotherapy, radiation, and millions of dollars in research, life expectancy is still abysmal, around one year on average.

The natural question most patients with a GBM ask is: Why did I get this? The truth as far as we know it, in the vast majority of cases, is that the tumor appeared for no particular reason. It is a random, unlucky, biological occurrence. A very small minority of patients are at higher risk because of a preexisting neurological syndrome, such as neurofibromatosis or tuberous sclerosis, or because of previous radiation to the head, but those risk factors account for only a small percentage. The rest are otherwise healthy, at least from a neurological perspective.

We’d love to be able to blame a certain chemical, work environment, home environment, bad habit, cell phone, or deity—we could work on prevention—but there’s just not strong enough evidence against any of them. I’m confident that a GBM is not retribution for any sin or misspent life (it would probably affect more than just fifteen thousand people per year if it were). In short, a brain tumor is the fault of no person or thing. As with a deadly hurricane, nature is often both powerful and indifferent.

One thing that experts in our field do know after years of research is that there are a few stereotypical genetic mutations found within GBM tumor tissue. But again, no one knows what causes those genes to mutate in the first place. Once a particular cell has been tainted by mutant genetic material, it tends to multiply and proliferate like no other brain cells, creating a mass, invading once normal tissue, recruiting additional blood vessels required for rapid growth, and pushing aside anything in its way. When it attains a large enough size, the growing tumor may outstrip its own blood supply, leading to cell death (necrosis) in the center, which can then contribute to aggressive swelling.

The main problem with these tumors is that they don’t have neat boundaries, regardless of how focused they may appear on scans. We can’t remove the whole tumor because we can’t see the whole thing. They’re too diffuse. No matter how good a job you think you did, and no matter how great the scan looks after surgery, the tumor eventually comes back. It’s frustrating as hell and a real blow to the surgical personality.

Consider what would happen if, when you try to open a bag of unpopped popcorn, the bag rips wide open, scattering the entire contents across the kitchen floor. A good-sized pile would end up right at your feet, and the kernels would radiate out from there. The relatively focused part of the mess would be easy to clean up. Over the next few days, though, you would be amazed to discover individual kernels that made it all the way under the dining room table or into the living room. That’s what a glioblastoma is like. You can clean up the focused mess, but you know there are cells you can’t see at first, far removed from the obvious focus.

Neurosurgeons have learned from their early predecessors. Decades ago, a few pioneering neurosurgeons, hoping to single-handedly cure patients of their glioblastoma, figured that all they had to do was remove a very large margin of normal-appearing brain tissue along with the tumor. That should prevent recurrence, right? They were so aggressive, in fact, that they would remove nearly the entire lobe of involved brain (the frontal lobe, for example), even if it meant causing a neurological deficit. That still didn’t work. The tumor would come back in a different lobe, even on the other side of the brain. The glioblastoma could not be outsmarted, and it still can’t, at least not yet. That hyperaggressive approach didn’t last long.

Despite clear lessons from history, there is still plenty of controversy regarding the best surgical strategy for these tumors. Some surgeons will spend an extra hour or two in the OR trying to suck out every last bit of abnormal-appearing brain tissue, sending small samples from the margins to the pathologist as they go, until they get to “clean” margins.