Not Your Median Patient: How A Climate Scientist Faced Cancer

Stephen Schneider

Stephen Schneider, climatologist and cancer survivor, died on July 19. Photo credit Patricia Pooladi / National Academy of Sciences; printed in Stanford Magazine, July/Aug 2010.

Not Your Median Patient:
How A Climate Scientist Faced Cancer
By John Unger Zussman

Stephen Schneider, the environmental scientist, died of a heart attack last month at the age of 65. He was a Stanford professor, a member of the Nobel Prize-winning Intergovernmental Panel on Climate Change, and a tireless and articulate advocate for action to counteract the threat of global warming. The blog Realclimate.org has posted a moving “scientific obituary” by Benjamin Santer of the Lawrence Livermore National Laboratory. There was even a tribute on the NPR program Science Friday.

What most of the obituaries mention only in passing (if at all) is that Schneider was a survivor of a rare and often deadly cancer called mantle cell lymphoma. He was diagnosed in 2001 and refused to accept both the medical establishment’s standard treatment and its dismal prognosis. Instead, he diligently applied to his cancer the same principles of decision analysis that he used as a climate scientist, and as a result persuaded his oncologist, Dr. Sandra Horning, to treat him more aggressively than the protocols dictated. In 2005, safely in remission, he published an account of that battle, The Patient from Hell.

I’ve written about cancer in these pages before, recounting what I learned when someone I love, “Bonnie,” was diagnosed with breast cancer, and discussing the role of environmental toxins in causing cancer. If you read that first piece, you might be surprised that Bonnie, who chose to “undertreat” her cancer, looked to Schneider, who chose to “overtreat” his, as a positive model. But she did, and in this essay I want to explain why.

Both Bonnie and Schneider found inspiration, in turn, from Stephen Jay Gould, the late, great evolutionary biologist. At age 41, Gould was diagnosed with abdominal mesothelioma, a cancer from which the median survival was only eight months after diagnosis. Two years later, he published a seminal essay entitled “The Median Isn’t the Message,” in which he interpreted that statistic and explained how he took hope from it. Beautifully written, it’s must reading—especially if you have been diagnosed with a serious illness.

The median, if you remember your college statistics, is a measure of the “average value” of a set of measurements that are distributed on a curve. It refers to the “middle” value if the measurements are sorted, high to low—half the scores are above, half below. It’s useful because it’s less sensitive to extremes than the mean, or mathematical average.

Gould realized that there was nothing magical about the median; it’s a measure of central tendency, but it doesn’t describe the distribution. His own survival might be any data point on that curve. Yes, 50% of abdominal mesothelioma patients survived eight months or less, but another 50% survived longer—some, given the characteristics of the distribution, significantly longer. Rather than despair, Gould set about figuring out how he could get himself on the long end of that curve.

And he did. He beat that cancer and had twenty more healthy and productive years—completing his magnum opus, The Structure of Evolutionary Theory—before he succumbed to an unrelated lung cancer in 2002.

Schneider’s insight was no less profound. He looked at the way the medical profession evaluates cancer treatments based on endpoints—survival or recurrence of the median patient at the end of a clinical trial of one treatment vs. another (or vs. a placebo). A good starting point, he said. But what if the disease is rare (like his) and there are no trials? Or what if a promising new treatment hasn’t yet been tested? Or what if you don’t resemble the median patient?

This situation reminded Schneider of climate science, in which you have a single patient (the Earth) whose symptoms are beginning to alarm you. Unfortunately, you lack good data on endpoints, your predictive models are imperfect, and the error ranges in your forecasts multiply upon each other. You have no other planets to run experiments with. “You can’t do controlled experiments on the future,” Schneider said in his last major interview. “What are we going to do, wait for it? Then apologize to posterity that we did nothing to slow it down?” Of course not. You collect as much data as you can about the climatic processes. You make your best estimates of the probabilities of each outcome, cognizant that they are only estimates, while continuing to monitor the data and update your models. And you make your best recommendations for policy that, you hope, will avoid the most catastrophic outcomes.

Applying these principles to medicine, in place of absent or inadequate clinical trials, or to supplement them, Schneider recommended process knowledge, Bayesian updating, and decision analysis. Process knowledge means that “your doctors should know how various treatments—both mainstream and not—work, how treatments for diseases similar to yours might work for you, what treatments are unlikely to be effective, and how your overall health could be affected.” Bayesian updating is a fancy statistical term for monitoring your response to treatment and adjusting it accordingly. Decision analysis means weighting potential outcomes, risks, and benefits by your doctors’ estimate of the likelihood of their occurrence as well as their confidence in that estimate.

Finally, Schneider, like Bonnie, insisted that his medical decisions were his to make. He treated his doctors as medical advisors, valuable for their knowledge, experience, and intuitions, but ultimately he had to make his own choices based on their advice.

If this sounds abstract, let me try to clarify with an example. One of the treatments Schneider’s doctors recommended, in addition to standard chemo, radiation, and a bone marrow transplant, was a new antibody drug called Rituxan. Rituxan targets a protein called CD20 that is expressed on the surface of B cells, the immune cells that cause mantle cell and other lymphomas. Essentially, Rituxan allows the body’s immune system to recognize B cells as foreign cells, which are then destroyed by the immune system’s NK (natural killer) cells.

The standard protocol was to administer a large dose of Rituxan (along with conventional chemo), then perform a bone marrow transplant, and then—to wait and see if the cancer came back, as detected by a CT scan. If it did—and 50% of patients on this protocol lost remission at least once within four years—they would try it again. But a second remission was harder to achieve than the first.

This didn’t sound like a good idea to Schneider. First, he questioned the means of monitoring his response to treatment. A CT scan won’t detect signs of cancer until there were already hundreds of millions of malignant cells and a detectable lump. Was there a way to monitor him more closely? It turned out there was, a highly sensitive molecular-based diagnostic test called PCR (polymeric chain reaction). PCR would provide a much more accurate measure of Schneider’s cancer cell count.

Schneider also realized that if the protocol didn’t kill the disease completely—and it was a coin toss whether it would—then the remaining cancer cells would keep reproducing, and in a few years he’d be right back where he started. Why not take a different tack, he reasoned, and presume the cancer is still present? It didn’t matter if his cancer was never cured, so long as the malignant cell count was kept below a dangerous level.

So Schneider requested what he called “maintenance therapy.” After the standard chemo, Rituxan, and bone marrow transplant, he wanted to receive low “maintenance” doses of Rituxan at periodic intervals. He also wanted periodic counts of his CD20 cells (to measure whether the Rituxan was wearing off) and cancer cells (via PCR), so that the dosage and interval could be adjusted if necessary. If his cancer cell count crept above negligible levels—signifying that his immune system wasn’t adequately controlling the cells—he would get another dose of Rituxan.

One of his doctors disapproved strongly. “We have no data whatsoever to suggest that low-dose interventions would have any benefit,” he said, “and operating without data would be foolhardy.” If there were no clinical trials showing that a particular treatment worked, it would be risky, idiotic, and even unethical to use it. Besides, side effects of the Rituxan might be damaging or even fatal.

So Schneider took his doctors through a decision analysis hypothetical. “Suppose you brought 100 people in off the street and gave them periodic maintenance doses of Rituxan,” he asked. “How many would die from the treatment?” The docs protested that they didn’t know because there were no trials. But Schneider persisted; he asked them to use their best clinical intuition and judgment. “Probably none, perhaps one,” Dr. Horning finally acknowledged.

“Now suppose you put 100 patients like me on the standard protocol,” Schneider asked. “How many would lose remission within five years?” “Probably eighty,” answered the docs. “And how many of those would not get back into remission with another chemo regime?” “Forty,” estimated the docs. “Who wouldn’t take that risk?” Schneider argued.

Schneider understood that he and his doctors were wandering into uncharted territory with Rituxan maintenance therapy. “There was no telling it would work,” he wrote in The Patient from Hell, “and no previous data that might help us develop a treatment plan.” But those are the risks you have to take when you are essentially running an experiment with incomplete data and a sample size of one. He viewed climate change the same way; with only one earth to experiment with, we’d better choose the treatment with the best chance of avoiding a catastrophic outcome.

This, I think, gives you a flavor of the way Schneider approached problems, both in climate science and in his battle with cancer. Ultimately, Dr. Horning agreed to put him on maintenance therapy—a low dose of Rituxan every three months—and it worked.

But Schneider was also an excellent writer and an engaging speaker, so I should get out of the way and let him explain it himself. Specifically, in 2008, Schneider gave a presentation at Stanford Medical School’s Café Scientifique entitled “Cancer and Climate Change: Parallels in Risk Management,” in which he outlined his approach to both issues. This talk is accessible and informative, and if you’re interested, I urge you to view it on YouTube or download it as a podcast from iTunes (available in the Medcast series from Stanford on iTunes U).

Near the end of the lecture (around 1:11), Schneider speculates, like Bonnie, that one reason doctors are so tied into the “standard treatment” has to do with liability issues. They are sometimes held accountable when, despite their best efforts, things go wrong. “I prescribed the standard treatment” is an almost universally successful defense against malpractice lawsuits. Schneider suggests that legislation is needed to exculpate doctors who, with their patients’ understanding and consent, depart from standard treatment to personalize their care.

One might wonder whether the aggressive treatment of Schneider’s cancer weakened his heart and eventually led to his heart attack. Of course, it’s impossible to know for certain. But it was a risk he took knowingly and voluntarily, believing that without that treatment he would likely be dead.

What Schneider and Bonnie share is their refusal to take the standard protocol on faith, their willingness to get their hands dirty with admittedly limited data, their insistence that their treatment be personalized, and their resolve to take responsibility for their own treatment decisions and outcomes. In the end, Schneider was able to spend his last nine years in good health, with his family, doing his life’s work—trying to make sure that we approach our climate the same way he approached his cancer. And that’s all any of us can ask for.

Copyright © 2010, John Unger Zussman. All rights reserved.

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Not Your Median Patient:
How A Scientist Faced Cancer
By John Unger Zussman

Stephen Schneider, the environmental scientist, died of a heart attack last month at the age of 65. He was a Stanford professor, a member of the Nobel Prize-winning Intergovernmental Panel on Climate Change, and a tireless and articulate advocate for action to counteract the threat of global warming. The blog Realclimate.org has posted a moving “scientific obituary” by Benjamin Santer of the Lawrence Livermore National Laboratory. There was even a tribute on the NPR program Science Friday.

What most of the obituaries mention only in passing (if at all) is that Schneider was a survivor of a rare and often deadly cancer called mantle cell lymphoma. He was diagnosed in 2001 and refused to accept both the medical establishment’s standard treatment and its dismal prognosis. Instead, he diligently applied to his cancer the same principles of decision analysis that he used as a climate scientist, and as a result persuaded his oncologist, Dr. Sandra Horning, to treat him more aggressively than the protocols dictated. In 2005, safely in remission, he published an account of that battle, The Patient from Hell.

I’ve written about cancer in these pages before, recounting what I learned when someone I love, “Bonnie,” was diagnosed with breast cancer, and discussing the role of environmental toxins in causing cancer. If you read that first piece, you might be surprised that Bonnie, who chose to “undertreat” her cancer, looked to Schneider, who chose to “overtreat” his, as a positive model. But she did, and in this essay I want to explain why.

Both Bonnie and Schneider found inspiration, in turn, from Stephen Jay Gould, the late, great evolutionary biologist. At age 41, Gould was diagnosed with abdominal mesothelioma, a cancer from which the median survival was only eight months after diagnosis. Two years later, he published a seminal essay entitled “The Median Isn’t the Message,” in which he interpreted that statistic and explained how he took hope from it. Beautifully written, it’s must reading—especially if you have been diagnosed with a serious illness.

The median, if you remember your college statistics, is a measure of the “average value” (central tendency) of a set of measurements that are distributed along a scale. It refers to the “middle” value if the measurements are sorted, top to bottom—half the scores are above, half below. It’s useful because it’s less sensitive to extremes than the mean, or mathematical average.

Gould realized that there was nothing magical about the median; it’s a measure of central tendency, but it doesn’t describe the distribution. His own survival might be any data point on that curve (constrained by the shape of the distribution). Yes, 50% of abdominal mesothelioma patients survived eight months or less, but another 50% survived longer—some, given the characteristics of the distribution, significantly longer. Rather than despair, Gould set about figuring out how he could get himself on the long end of that curve.

And he did. He beat that cancer and had twenty more healthy and productive years—completing his magnum opus, The Structure of Evolutionary Theory—before he succumbed to an unrelated lung cancer in 2002.

Schneider’s insight was no less profound. He looked at the way the medical profession evaluates cancer treatments based on endpoints—survival or recurrence of the median patient at the end of a clinical trial of one treatment vs. another (or vs. a placebo). A good starting point, he said. But what if the disease is rare (like his) and there are no trials? Or what if a promising new treatment hasn’t yet been tested? Or what if you don’t resemble the median patient?

This situation reminded Schneider of climate science, in which you have a single patient (the Earth) whose symptoms are beginning to alarm you. Unfortunately, you lack good data on endpoints, your predictive models are imperfect, and the error ranges in your forecasts multiply upon each other. You have no other planets to run experiments with. “You can’t do controlled experiments on the future,” Schneider said in his last major interview. “What are we going to do, wait for it?” Of course not. You collect as much data as you can about the climatic processes. You make your best estimates of the probabilities of each outcome, cognizant that they are only estimates, while continuing to monitor the data and update your models. And you make your best recommendations for policy that, you hope, will avoid the most catastrophic outcomes.

Applying these principles to medicine, in place of absent or inadequate clinical trials, or to supplement them, Schneider recommends process knowledge, Bayesian updating, and decision analysis. Process knowledge means that “your doctors should know how various treatments—both mainstream and not—work, how treatments for diseases similar to yours might work for you, what treatments are unlikely to be effective, and how your overall health could be effective.” Bayesian updating is a fancy statistical term for monitoring your response to treatment and adjusting it accordingly. Decision analysis means weighting potential outcomes, risks, and benefits by your doctors’ estimate of the likelihood of their occurrence as well as their confidence in that estimate.

Finally, Schneider, like Bonnie, insisted that his medical decisions were his to make. He treated his doctors as medical advisors, valuable for their knowledge, experience, and intuitions, but ultimately he had to make his own choices based on their advice.

If this sounds abstract, let me try to clarify with an example. One of the treatments Schneider’s doctors recommended, in addition to standard chemo, radiation, and a bone marrow transplant, was a new antibody drug called Rituxan. Rituxan targets a protein called CD20 that is expressed on the surface of B cells, the immune cells that cause mantle cell and other lymphomas. Essentially, Rituxan allows the body’s immune system to recognize B cells as foreign cells, which are then destroyed by the immune system’s NK (natural killer) cells.

The standard protocol was to administer a large dose of Rituxan (along with conventional chemo), then perform a bone marrow transplant, and then—to wait and see if the cancer came back, as detected by a CT scan. If it did—and 50% of patients on this protocol lost remission at least once within four years—they would try it again. But a second remission was harder to achieve than the first.

This didn’t sound like a good idea to Schneider. First, he questioned the means of monitoring his response to treatment. A CT scan won’t detect signs of cancer until there were already hundreds of millions of malignant cells and a detectable lump. Was there a way to monitor him more closely? It turned out there was, a highly sensitive molecular-based diagnostic test called PCR (polymeric chain reaction). PCR would provide a much more accurate measure of Schneider’s cancer cell count.

Schneider also realized that if the protocol didn’t kill the disease completely—and it was a coin toss whether it would—then the remaining cancer cells would keep reproducing, and in a few years he’d be right back where he started. Why not take a different tack, he reasoned, and presume the cancer is still present? It didn’t matter if his cancer was never cured, so long as the malignant cell count was kept below a dangerous level.

So Schneider requested what he called “maintenance therapy.” After the standard chemo, Rituxan, and bone marrow transplant, he wanted to receive low “maintenance” doses of Rituxan at periodic intervals. He also wanted periodic counts of his CD20 cells (to measure whether the Rituxan was wearing off) and cancer cells (via PCR), so that the dosage and interval could be adjusted if necessary. If his cancer cell count crept above negligible levels—signifying that his immune system wasn’t adequately controlling the cells—he would get another dose of Rituxan.

One of his doctors disapproved strongly. “We have no data whatsoever to suggest that low-dose interventions would have any benefit,” he said, “and operating without data would be foolhardy.” If there were no clinical trials showing that a particular treatment worked, it would be risky, idiotic, and even unethical to use it. Besides, side effects of the Rituxan might be damaging or even fatal.

So Schneider took his doctors through a decision analysis hypothetical. “Suppose you brought 100 people in off the street and gave them periodic maintenance doses of Rituxan,” he asked. “How many would die from the treatment?” The docs protested that they didn’t know because there were no trials. But Schneider persisted; he asked them to use their best clinical intuition and judgment. “Probably none, perhaps one,” Dr. Horning finally acknowledged.

“Now suppose you put 100 patients like me on the standard protocol,” Schneider asked. “How many would lose remission within five years?” “Probably eighty,” answered the docs. “And how many of those would not get back into remission with another chemo regime?” “Forty,” estimated the docs. “Who wouldn’t take that risk?” Schneider argued.

Schneider understood that he and his doctors were wandering into uncharted territory with Rituxan maintenance therapy. “There was no telling it would work,” he wrote in The Patient from Hell, “and no previous data that might help us develop a treatment plan.” But those are the risks you have to take when you are essentially running an experiment with incomplete data and a sample size of one. He viewed climate change the same way; with only one earth to experiment with, we’d better choose the treatment with the best chance of avoiding a catastrophic outcome.

This, I think, gives you a flavor of the way Schneider approached problems, both in climate science and in his battle with cancer. Ultimately, Dr. Horning agreed to put him on maintenance therapy—a low dose of Rituxan every three months—and it worked.

But Schneider was also an excellent writer and an engaging speaker, so I should get out of the way and let him explain it himself. Specifically, in 2008, Schneider gave a presentation at Stanford Medical School’s Café Scientifique entitled “Cancer and Climate Change: Parallels in Risk Management,” in which he outlined his approach to both issues. This talk is accessible and informative, and if you’re interested, I urge you to view it on YouTube or download it as a podcast from iTunes (available in the Medcast series from Stanford on iTunes U).

Near the end of the lecture (around 1:11), Schneider speculates, like Bonnie, that one reason doctors are so tied into the “standard treatment” has to do with liability issues. They are sometimes held accountable when, despite their best efforts, things go wrong. “I prescribed the standard treatment” is an almost universally successful defense against malpractice lawsuits. Schneider suggests that legislation is needed to exculpate doctors who, with their patients’ understanding and consent, depart from standard treatment to personalize their care.

One might wonder whether Schneider’s aggressive treatment of his cancer weakened his heart and eventually led to his heart attack. Of course, it’s impossible to know for certain. But it was a risk he took knowingly and voluntarily, believing that without that treatment he would likely be dead.

What Schneider and Bonnie share is their refusal to take the standard protocol on faith, their willingness to get their hands dirty with admittedly limited data, their insistence that their treatment be personalized, and their resolve to take responsibility for their own treatment decisions and outcomes. In the end, Schneider was able to spend his last nine years in good health, with his family, doing his life’s work—trying to make sure that we approach our climate the same way he approached his cancer. And that’s all any of us can ask for.

Copyright © 2010, John Unger Zussman. All rights reserved.

Against Medical Advice

Human pink ribbon 2005

Against Medical Advice
By John Unger Zussman

A woman I’ll call Bonnie sat in the exam room with her husband, waiting for her oncologist. They held hands without speaking, wearing thin, brave smiles.

(I’ve given Bonnie a pseudonym, and refrained from identifying my relationship to her, out of respect for her privacy. Suffice it to say we are close.)

Three months earlier, after a suspicious mammogram, a biopsy came back positive. Bonnie had a malignant breast tumor.

The diagnosis was a shock to Bonnie, who had no history of cancer in her family. She had to learn to cope with her brand-new reality. But watching someone I love face cancer set off land mines in my brain. My father died from rhabdomyosarcoma at age 35, when I was ten; my sister died of breast cancer at 45. My mother survived breast cancer in her 30s and spindle-cell sarcoma in her 70s, just after my adoptive father (her second husband) was treated for prostate cancer.

So I lived with a sword hanging above my head, expecting that someday I’d have to face that diagnosis myself. Once, my doctor’s office left a message on a Friday asking me to repeat a Hemoccult test. I spent an angst-filled, sleepless weekend convinced I was dying of colon cancer. It turned out that only one of the three samples had read positive—a fairly common occurrence—and the retest came out normal. Still, cancer is my demon, and Bonnie’s cancer let it loose.

The doctors put Bonnie through an exhausting battery of X-rays, MRIs, and CT scans to find out how much it might have spread. Meanwhile Bonnie worked her way through denial, anger, and depression, the first three stages of grief. She scoured the Internet medical sites and joined her local breast cancer support center.

After all the test results were in, her surgeon arranged for her to appear before the tumor board at his hospital, a celebrated university cancer center. First, a group of surgeons and oncologists came in to examine her. “It was strange, sitting there,” Bonnie’s husband said later, “as that parade of medical people took turns feeling her up.” Then she waited while the doctors reviewed her case.

Finally, they met with the hospital’s top breast cancer expert. He presided over the tumor board and was to be her oncologist.

“We’ve reviewed your case,” he told Bonnie, “and we all agree. If your surgery goes as we expect, you’re going to go through six months of hell. But then you’ll be fine.” Although the tumor was small, he explained, it was an aggressive type and might have spread to her lymph nodes. She would probably need radiation followed by chemotherapy.

Bonnie looked at her husband uneasily. She dreaded the thought of radiation and chemo, which had taken a physical and emotional toll on every breast cancer patient she knew.

As Bonnie’s lumpectomy date approached, she moved on to bargaining. Her research said that if her lymph nodes were not affected—that is, if she had stage 1 cancer— she would probably need no chemo, maybe not even radiation. And the less stress she subjected her body to, the better.

Bonnie’s hopes were fulfilled when the surgeon brought good news. She had caught it early. The tumor was small, the surgical margins were clear, and no lymph nodes were affected. Her cancer was only stage 1, and the surgeon was confident he had gotten it all.

Relieved, she settled into acceptance. And now, a few weeks later, she and her husband looked up as her oncologist entered her exam room and sat down. He congratulated her on her successful surgery and her positive test results.

And then he dictated a full course of radiation followed by aggressive chemotherapy.

This wasn’t what Bonnie had bargained for. She questioned him, but he was relentless. He couldn’t be sure that some cancer cells hadn’t escaped or that they wouldn’t metastasize. And that’s what you really want to avoid, he said. When she continued to resist, especially the chemo, he became defensive. “Why are we having this conversation if you’ve already made up your mind?” he demanded. He wasn’t used to mere patients questioning his authority.

Finally, Bonnie asked directly, “What if I go without chemo?”

“It’s risky,” he replied, “I wouldn’t recommend it.”

“What if I skip radiation?”

“I’ll strap you to the table.”

Bonnie doesn’t cotton to being told what to do. “I don’t believe in hell,” she said later. She quickly regressed back to anger—and stayed there.

The first thing she did was fire her oncologist. She couldn’t believe the good results had not altered his treatment plan even a millimeter. “I want a doc who’ll treat me, not my cancer,” she said.

I tried to be supportive, but challenging medical authority is not my nature. I didn’t even know you could fire your oncologist. I wanted her to explore every avenue, use every medical weapon to beat this disease. Foregoing further treatment seemed a great risk, tempting fate, taking a chance with her life. Of all my fears, this was the oldest and most devastating. Bonnie’s cancer unleashed my demons and awakened my nightmares.

Bonnie stepped up her research and sought a second opinion. She also got access to a website, widely used by medical professionals, that estimates the risk of breast cancer relapse and mortality based on characteristics of the patient, her tumor, and potential chemotherapy.

And when she described that research, to my surprise, it was my mind that began to change. Bonnie’s prognosis was good no matter what she did. Radiation would cut the chance of recurrence, but it would have no effect on her survival and might cause long-term heart damage. Chemo would increase her chance of survival by a few percent, but she would be flooding her system with poisons that would cause nausea, hair loss, and the possibility of long-term cognitive and systemic impairment. That made her decision easy: no radiation, no chemo.

Her surgeon, whom she liked and trusted, tried to dissuade her. “What will happen,” he asked, “if the worst happens and you get a recurrence or even a metastasis? How will you feel then? Won’t you regret this?”

“Not for a minute,” she said without hesitation.

We often talk about patients waging a “courageous battle with cancer.” This usually means they try every means available, suffer every side effect, in the attempt to conquer their disease. But it also takes courage to forego treatment—to understand the odds and trust them, to know your own body and what’s best for it, to realize that, for you, the treatment might be worse than the disease.

Most cancer professionals are courageous too, and dedicated. They take their best shot and watch their patients die and then have to come back the next day and do it all again. It’s no wonder that they want to use every possible tool to beat this damn disease.

So they develop a standard treatment and apply it across the board. No doubt this is partly dictated by insurance and liability concerns. “Radiation? Of course you want radiation. It reduces the risk of recurrence by 40% or more.” But when that risk is low to begin with, when it doesn’t increase your chance of survival, and when you add the risks of radiation itself—the choice is far from obvious. Women need the option to make their own decision.

In the end, ironically, it’s not the oncologists’ job to cure cancer. Their job is to treat their patients—and it’s not the same thing.

Twenty-one months later, Bonnie is both healthy and steadfast, without a moment of doubt or regret. The odds are in her favor. I try not to second-guess her, even if I know that disaster might lurk in every screening exam and mammogram, even if just writing these words seems like tempting the gods. It’s her body and her decision, not her doctor’s.

The health care establishment and the breathless media sometimes tout new treatments as medical miracles. But they have risks and cause damage, which have to be weighed against their benefits. I hope to explore this calculus in future posts, and explore what it’s taught me about medicine and the state of our culture. I’ll also describe the ways Bonnie has chosen to manage her risk of recurrence and metastasis. She is not going gentle unto that good night.

Please note that I am not a medical doctor (nor do I play one on TV), so my reflections are meant to be descriptive and not prescriptive. I wouldn’t pretend to tell anyone else what to do. I invite your comments and, especially, your own stories.

Shortly after Bonnie made her decision, she learned that her original oncologist was running a clinical trial with, coincidentally, the same chemo medications he prescribed for Bonnie.

By that time, Bonnie had found a new oncologist. He gives her options, not orders.

Copyright © 2010 by John Unger Zussman. All rights reserved.

Against Medical Advice By John Unger Zussman   A woman I’ll call Bonnie sat in the exam room with her husband, waiting for her oncologist. They held hands without speaking, wearing thin, brave smiles.    (I’ve given Bonnie a pseudonym, and refrained from identifying my relationship to her, out of respect for her privacy. Suffice it to say we are close.)   Three months earlier, after a suspicious mammogram, a biopsy came back positive. Bonnie had a malignant breast tumor.    The diagnosis was a shock to Bonnie, who had no history of cancer in her family. She had to learn to cope with her brand-new reality. But watching someone I love face cancer set off land mines in my brain. My father died from rhabdomyosarcoma at age 35, when I was ten; my sister died of breast cancer at 45. My mother survived breast cancer in her 30s and spindle-cell sarcoma in her 70s, just after my adoptive father (her second husband) was treated for prostate cancer.    So I lived with a sword hanging above my head, expecting that someday I’d have to face that diagnosis myself. Once, my doctor’s office left a message on a Friday asking me to repeat a Hemoccult test. I spent an angst-filled, sleepless weekend convinced I was dying of colon cancer. It turned out that only one of the three samples had read positive—a fairly common occurrence—and the retest came out normal. Still, cancer is my demon, and Bonnie’s cancer empowered it.   The doctors put Bonnie through an exhausting battery of X-rays, MRIs, and CT scans to find out how much it might have spread. Meanwhile Bonnie worked her way through denial, anger, and depression, the first three stages of grief. She scoured the Internet medical sites and joined her local breast cancer support center.   After all the test results were in, her surgeon arranged for her to appear before the tumor board at his hospital, a celebrated university cancer center. First, a group of surgeons and oncologists came in to examine her. “It was strange, sitting there,” Bonnie’s husband said later, “as that parade of medical people took turns feeling her up.” Then she waited while the doctors reviewed her case.   Finally, they met with the hospital’s top breast cancer expert. He presided over the tumor board, and was to be her oncologist.    “We’ve reviewed your case,” he told Bonnie, “and we all agree. If your surgery goes as we expect, you’re going to go through six months of hell. But then you’ll be fine.” Although the tumor was small, he explained, it was an aggressive type and might have spread to her lymph nodes. She would probably need radiation followed by chemotherapy.    Bonnie and looked at her husband uneasily. She dreaded the thought of radiation and chemo, which had taken a physical and emotional toll on every breast cancer patient she knew.    As Bonnie’s lumpectomy date approached, she moved on to bargaining. Her research said that if her lymph nodes were not affected—that is, if she had stage 1 cancer— she would probably need no chemo, maybe not even radiation. And the less stress she subjected her body to, the better.   Bonnie’s hopes were fulfilled when the surgeon brought good news. She had caught it early. The tumor was small, the surgical margins were clear, and no lymph nodes were affected. Her cancer was only stage 1, and the surgeon was confident he had gotten it all.   Relieved, she settled into acceptance. And now, a few weeks later, she and her husband looked up as her oncologist entered her exam room and sat down. He congratulated her on her successful surgery and her positive test results.   And then he dictated a full course of radiation followed by aggressive chemotherapy.    This wasn’t what Bonnie had bargained for. She questioned him, but he was relentless. He couldn’t be sure that some cancer cells hadn’t escaped or that they wouldn’t metastasize. And that’s what you really want to avoid, he said. When she continued to resist, especially the chemo, he became curt. “Why are we having this conversation if you’ve already made up your mind?” he demanded. He wasn’t used to mere patients questioning his authority.   Finally, Bonnie asked directly, “What if I go without chemo?”    “It’s risky,” he replied, “I wouldn’t recommend it.”    “What if I skip radiation?”    “I’ll strap you to the table.”   Bonnie doesn’t cotton to being told what to do. “I don’t believe in hell,” she said later. She quickly regressed back to anger—and stayed there.    The first thing she did was fire her oncologist. She couldn’t believe the good results had not altered his treatment plan even a millimeter. “I want a doc who’ll treat me, not my cancer,” she said.   I tried to be supportive, but challenging medical authority is not my nature. I didn’t even know you could fire your oncologist. I wanted her to explore every avenue, use every medical weapon to beat this disease. Foregoing further treatment seemed a great risk, tempting fate, taking a chance with her life. Of all my fears, this was the oldest and most devastating. Bonnie’s cancer unleashed my demons and awakened my nightmares.   Bonnie stepped up her research and sought a second opinion. She also got access to a website, widely used by medical professionals, that estimates the risk of breast cancer relapse and mortality based on characteristics of the patient, her tumor, and potential chemotherapy.   And when she described that research, to my surprise, it was my mind that began to change. Bonnie’s prognosis was good no matter what she did. Radiation would cut the chance of recurrence, but it would have no effect on her survival and might cause long-term heart damage. Chemo would increase her chance of survival by a few percent, but she would be flooding her system with poisons that would cause nausea, hair loss, and the possibility of long-term cognitive and systemic impairment. That made her decision easy: no radiation, no chemo.    Her surgeon, whom she liked and trusted, tried to dissuade her. “What will happen,” he asked, “if the worst happens and you get a recurrence or even a metastasis? How will you feel then? Won’t you regret this?”   “Not for a minute,” she said without hesitation.    We often talk about patients waging a “courageous battle with cancer.” This usually means they try every means available, suffer every side effect, in the attempt to conquer their disease. But it also takes courage to forego treatment—to understand the odds and trust them, to know your own body and what’s best for it, to realize that, for you, the treatment might be worse than the disease.   Most cancer professionals are courageous too, and dedicated. They take their best shot and watch their patients die and then have to come back the next day and do it all again. It’s no wonder that they want to use every possible tool to beat this damn disease.    So they develop a standard treatment and apply it across the board. No doubt this is partly dictated by insurance and liability concerns. “Radiation? Of course you want radiation. It reduces the risk of recurrence by 40%.” But do the math. When that risk starts at 5%, when radiation reduces that risk (by 40% of 5%) to 3%, when it doesn’t increase your chance of survival, and when you add the risks of radiation itself—the choice is far from obvious. Women need the option to make their own decision.   In the end, ironically, it’s not the oncologists’ job to cure cancer. Their job is to treat their patients—and it’s not the same thing.    Twenty-one months later, Bonnie is both healthy and steadfast, without a moment of doubt or regret. The odds are in her favor. I try not to second-guess her, even if I know that disaster might lurk in every screening exam and mammogram, even if just writing these words seems like tempting fate. It’s her body and her decision, not her doctor’s.    The health care establishment and the breathless media sometimes tout new treatments as medical miracles. But they have risks and they cause damage, which have to be weighed against their benefits. I hope to explore this calculus in future posts, and explore what it’s taught me about medicine and the state of our culture. I’ll also describe the ways Bonnie has chosen to manage her risk of recurrence and metastasis. She is not going gentle unto that good night.   Please note that I am not a medical doctor (nor do I play one on TV), so my reflections are meant to be descriptive and not prescriptive. I wouldn’t pretend to tell anyone else what to do. I invite your comments and, especially, your own stories.   Shortly after Bonnie made her decision, she learned that her original oncologist was running a clinical trial with, coincidentally, the same chemo medications he prescribed for Bonnie.   By that time, Bonnie had found a new oncologist. He gives her options, not orders.