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The NUMBERS

ep. 201

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In this episode, we explore how the metaphor of "fighting" cancer stands in cancer research. Where are we in this war? To answer this question, the Metastasis team turned to the history of cancer in a 1997 paper titled "Cancer Undefeated" by statisticians Dr. John Bailar and Dr. Heather Gornik. It turns out that if you take survival rates as a measure for progress against cancer, the results don't show success. Special guests include Dr. Barbara Bailar and guest producer Dr. Melissa Bailar.

transcript

BILAL REHMAN: This is meta-stasis. I'm your host, Bilal Rehman.

Today we're looking at cancer from the perspective of numbers—the number of casualties in what many have called, "the War on Cancer."

We hear this war metaphor a lot—that we're in some kind of battle, and that patient bodies are ready to be counted should they succeed and beat cancer, or fail and die.

And you might think that it's easy to pin down this body count; to declare that we are "winning" the war. But it's harder than it looks.

Part 1: Watching Cancer not Fighting it

[music]

BR: Not everybody buys into the war metaphor.

When my own mother was diagnosed with lymphoma, she and the rest of my family weren't preparing for battle. We were just desperately hoping that the cancer was treatable.

BR: I remember, she was at the dentist for a routine check-up when they found a growth on her inner cheek. After an emergency biopsy, we got the results back that the growth was a 'lymphoma.' My parents came home to me and my sister and said, "Your mom has cancer." We were scared.

There was no sense of preparing for battle, no adversary to resist, no hope fueled by resilience. All we could do was pray. Cancer was just something life had thrown at us and we needed to wait to see what other news would come our way. Weeks would pass before we knew how severe the cancer was, what stage it was at, and if it could even be treated.

BR: Thankfully, after a month, we learned that my mom's lymphoma was stage one and highly treatable. It was really the best case scenario. We could go on with life, visit family in Pakistan as we had planned, and start my mom's radiation treatment after we came back. I remember the dark patches that the radiation started leaving on her cheek. My mom hated those patches. They were blemishes, scars.

We held our breath after each visit to the oncologist because we didn't want bad news. After a few months, the growth was gone.

BR: A few years went by. Life went on. But when my mom visited her oncologist in the summer of 2019, they found a growth in her mandibular gland and another on her jaw.

The doctors aren't sure what it is, but they suspect it's the same kind of lymphoma. Some have said to treat it, others have said that it didn't seem urgent.

Since then, we've just been "watching" the cancer, or as my parents say "monitoring..."

BR: English is my parent's second language. We don't really use technical terms like "remission" or "maintenance" when talking about my mom's cancer. My mom doesn't even like to use the word "cancer" because it scares her. My relatives don't use the word "remission" either. We're all just "watching."

There is no war to wage.

If you declare war on something, it means that you can't live with it. When we say that we're "watching" cancer in Urdu, it makes it possible to live with the disease. It's not an enemy that we have to destroy, at least...not for now.

[music]

Part 2. The Many Wars

BR: The United States government has waged many wars, and most of them like the "War on Terror," often sound misguided to me.

Politicians and public health officials have "declared war" on AIDS, diabetes, poverty, and drug addiction. President Nixon first declared the War on Cancer in 1971. These narratives were products of the Cold War, developed in response to the threat of nuclear arms.

A declaration of war against a disease is meant to mobilize people. It's meant for scientists, doctors, and public health experts to direct their resources based on a specific agenda. We know these slogans. For example, the MD Anderson Cancer Center is known for the phrase "making cancer history." Their mission is clear: to eradicate cancer, to make it a distant memory.

BR: But in framing disease as a battle, success doesn't mean coming to terms with it, but surviving it. At the end of the day, the success or failure lies with the patient. It is their bodies that are the sites of war. It is them who live or die.

So, where are we in this war?

To answer this question, we turned to the history of cancer in a 1997 paper titled "Cancer Undefeated" by statisticians Dr. John Bailar and his then graduate student Dr. Heather Gornik. It turns out that if you take survival rates as a measure for progress against cancer, the results don't show success.

Bailar and Gornik had made a bold claim. It started with a simple premise: did developments in biomedical therapies lead to a decrease in cancer-related deaths? Their answer was: No. We weren't "winning" the war.

[music]

BR: To learn more about this research, the Metastasis team sat down with Dr. Gornik, one of the authors of the paper.

HEATHER GORNIK: I went to the Library at the University of Chicago, and they publish these tables, these huge books of every cause of death, broken down by sex, race, age strata cause of death. And I photocopied the pages of this book, you know, dating back because we went back to 1970 through 1995 or so, photocopies of these huge tables, you know, by esophageal cancer ages zero to x ages x to x ages x to x, white, black female, male paper copies. And then I entered the data into spreadsheets manually.

BR: Dr. Gornik had taken cancer statistics from the National Cancer Institute from 1970-1994 and calculated "age adjusted mortality rates." This meant assigning weights to specific age groups in a population, and multiplying the weights by the age groups' respective mortality rates. These weighted rates are then combined to achieve the age-adjusted mortality rate, which accounts for natural discrepancies among the age groups. So , if you were looking at death rates of people in their 20s, or people in their 90s, the people in their 90s are going to have higher rates of death because of co-morbidities, or other natural, age-related causes of death. For example, if you're 92 and you have cancer and die, can you count this as a cancer-related death when the elderly naturally have a higher death rate?

HEATHER GORNIK: We basically created recreated using the published data, this data set of all cancer deaths by cancer type, age, sex. And then the big, I guess if there's any statistical or technical advance that this paper does, a lot of it is interpretation. But the technical advance was that at the time, cancer statistics were not being age adjusted to the appropriate standard. They were using a much different census from years ago, which had a younger population.

BR: Bailar and Gornik had found a snag in the National Cancer Institute's calculations. The NCI had been using weights from an older model, in fact, a decades-old model in a period of American history when more young people were dying from diseases. Of course, the NCI's numbers would show that as time went on, fewer young people were dying.

Of course these numbers would show that we were "winning" the war on cancer.

But come the 1990s, the American population's demographics had changed. Bailar and Gornik captured these changes by re-analyzing the data, importing new weights, and running the same analysis. But they came up with a very different picture: they found that over the course of 24 years from the 1970s to the 1990s, the age-adjusted mortality rate for cancer had increased by 6%.

HEATHER GORNIK: The paper, I think, among clinicians, was also a bitter pill to swallow. Because I think if you're an individual doctor, you're not looking at the population level trends. But you're seeing more you can offer your individual patient in 1997, compared to 1987. And you see from clinical trials, yes, there is incremental improvement in outcomes for individual patients. I think to see this global message that we're not making progress is very discouraging. So I would say most of the pushback and negative perceptions came from cancer, clinicians, cancer establishment, and probably policymakers and National Cancer Institute and those sorts of things did not hear much from industry.

BR: Bailar and Gornik didn't exactly contradict the metaphor of the war on cancer. Simply put, we—as a population—were losing. More people were dying of cancer, not fewer. While we had made some strides, those strides weren't really due to biomedical developments or more advanced therapies. Instead, the improvements in mortality for some types of cancer were more a result of enacting preventative measures, like smoking cessation.

Part 3. A Disease of Civilization 

BR: Bailar had long been critical of the NCI. He understood how the war metaphor could animate politicians and mobilize resources. He wanted to use the appropriate mathematical tools to upset the national narrative using a concise and unbiased framework. His wife, Dr. Barbara Bailar, who also happened to be a statistician, recognized this need to simplify a complex problem.

BARBARA BAILAR: I thought all the time that he was a remarkably good statistician, he was very smart and he knew how to explain things very well to people.

BR: Bailar had found that the NCI had used bad math to support political narratives of progress against cancer. Beyond criticizing statements of "winning" the war on cancer, Bailar was critical of other aspects related to public health and tried to use more rigorous applications of mathematical models to correct for misperceptions. As his daughter Dr. Melissa Bailar puts it,

MELISSA BAILAR: He also worked on quite a bit on mammograms and there, he was concerned with over-testing and having too many, um, you know, mammograms, um, that, you know, that racked up expenses had led to increased radiation exposure, and didn't really do much good in terms of, of cancer rates. Um, and he, he took on also a lot of special projects, um, with the national academies. He kind of, you know, I remember one time he was doing something, um, um, with, uh, water contamination at one point, he w he actually worked in Houston once in awhile on air quality in cancer rates.

BR: Bailar and Gornik's paper had a huge impact. Oncologists responded with a range of grievances, some feeling betrayed, some validated, and some indignant. Researchers worried that their own funding would be compromised if the government turned towards the language and policies of prevention. Others insisted on doubling down on the war metaphor, and simply committed to "fighting" harder.

But Dr. Nicholas Wilcken, a professor of oncology at Westmead Hospital in Sydney, had a more thought-provoking response. He wrote,

"In wars there are the victors and the vanquished (not always easily distinguished), and collateral damage is all too common. Wars delay and obfuscate problems but do not often solve them. Wars encourage simplistic and jingoistic attitudes - us versus them. But cancer is so much more complex than this. There is no invading army, no call to arms, no enemy - the trouble is within...it is time to redefine the problem. Although we should continue our exploration of the biology of cancer, trials of new therapies, and population-based preventive strategies, we also need to face the inevitability of cancer. Cancer is the price we pay for being sophisticated organisms...the emphasis should be on living with cancer rather than dying in battle."

[music]

BR: This response resonated with me. From my own experience, cancer seemed like a random biological event. The "war" metaphor didn't apply. Bodies aren't battlegrounds, and whether we "win" or "lose" is beyond our own control. When my mom was diagnosed with lymphoma, one of my friend's mom was also facing cancer. She died just a few months after my mom had received treatment. Is it fair to say that my mom had "won" the battle and hers had "lost"? I don't think so.

Maybe it's time to end the language of a war on cancer. Mortality isn't meaningless, but it creates odd expectations in the context of cancer.

 

People die from cancer. But rather than simply framing cancer deaths as a sign of loss, maybe it's time to recognize that cancer itself is a fact of life. Something to avoid to the extent that we can, but also something to make peace with.

 

REFERENCES

Bailar III, John and Heather Gornik. "Cancer Undefeated." The New England Journal of Medicine, 366, no. 22 (1997): 1569-1574.

“National Cancer Act of 1971.” National Cancer Institute, February 16, 2016. National Cancer Institute. https://www.cancer.gov/about-nci/overview/history/national-cancer-act-1971.

Shepardson, Laura B., and Laura Dean. “Current Controversies in Breast Cancer Screening.” Seminars in Oncology, Breast Cancer, 47, no. 4 (August 1, 2020): 177–81. https://doi.org/10.1053/j.seminoncol.2020.05.002.

Wilcken, Nicholas. "Winning the War on Cancer - Correspondence." The New England Journal of Medicine, 337, no. 13 (1997): 937.