Ken Burns' stunning new documentary about cancer: "We’ve always been on the cusp of the cure"

Burns and director Barak Goodman talk to us about the ambitious and personal "Cancer: The Emperor Of All Maladies"

Published March 29, 2015 8:30PM (EDT)


From Monday to Wednesday of this week, PBS will be airing “Cancer: The Emperor of All Maladies,” an exhaustive examination of what humanity knows about cancer—scientifically, historically and, perhaps most cogently, from the deeply personal point-of-view of a patient with the disease. The documentary is based on Siddhartha Mukherjee’s Pulitzer Prize-winning book “The Emperor of All Maladies: A Biography Of Cancer,” and the author features prominently in each two-hour installment. But the documentary is more of a companion piece to the book than a reiteration of it—where Mukherjee offered poetry, the filmmakers had to find a way to depict and explain a disease that is often hidden and still mystifies us.

Those filmmakers include executive producer Ken Burns, a proven master of the documentary form over the last 30 years, and director Barak Goodman, who has worked on numerous features for public television. But they weren’t alone: “Cancer: The Emperor of All Maladies” is, top to bottom, a collaborative effort. The film has come together not just with the efforts of Mukherjee, Burns, Goodman and the film’s four other producers, but also 15 sponsors, dozens of interviewed experts, and the numerous patients who contributed time to the documentary.

Most important, though, the documentary leans on the hundred-plus years of scientific research into cancer—and the thousands of years of history recording cancer’s devastating effects on humanity. As Ken Burns told me, “Cancer: The Emperor of All Maladies” is an attempt to offer a snapshot of everything we, collectively, know about cancer at this moment in time. It’s the sum total of humanity’s understanding of cancer, of this disease as we know it. It is in many ways a devastating story—no one would know that more than Burns, who watched his mother die of breast cancer as a child. But as both Goodman and Burns impressed upon me, the story of cancer has also become remarkably hopeful one—more hopeful than it was even 30 years ago. I spoke with both men about the difficulties of making a documentary about such a painful subject and how their own perceptions of cancer changed while creating this film.

Cancer, obviously, is a tough topic for a lot of people. What did you think about when you were thinking about creating something that was going to be so hard for people to watch?

Ken Burns: This is life and death. Drama and stories are one thing, but life and death is another thing. I couldn’t not do it because of my own family history. I watched my mother die for the first 11 years of my life. That was not fun. And yet, you would not be talking to me if she hadn’t died. My interest in history is about having a conversation with the dead. So with Sharon Rockefeller, who had just survived cancer, who is the head of the Washington, D.C., PBS affiliate, came and said, “You have to do it.” I said, “But you know better than anyone how busy I am.” And she said, “Here, read this book.” And I read it and I said, “OK, I’ll do it. I don’t know how we’re going to do it but I’ll find a producer, a day-to-day,” and thank God we found Barak. Sid’s book was this extraordinary book of literature that provided a real template. Whenever we were lost and we’d look at each other and say, “Well, what does Sid say?” And we would suddenly find the crumbs that he’d left behind for us and get back on track.

This documentary was challenging and terrifying, the intermixing of complex history and really complex science. And then, of course, anchored by these real people and real lives that in some ways complemented the historical narrative and in some ways were counterpoints to in. The intertwining of those three elements is incredibly challenging for all of us.

Barak Goodman: I’m hoping what happens with viewers is what happened with me personally over the course of making this film. I entered it like most laypeople, with this absolute terror of even the very word—I’ve lost grandmothers to it, Ken lost his mother. We’re so scared of this word, cancer, but we don’t know very much about it. What I learned in the course of making it is that cancer isn’t one thing, it’s many things and many of those things are highly treatable and curable. Even the ones that aren’t, there’s been tremendous progress made. I had a sense—many people have a sense that this work of cancer has been a failure, that we haven’t, despite the billions of dollars, that we haven’t made much progress. That turns out to be dead wrong.

Progress made in the last 40 years, even most especially in the last 10 years, has been staggering. It’s brought us to a place where we are—and there was absolute unanimity about this among the people we spoke to, a consensus—that we are on the brink of a real revolution in cancer therapy and that the next generation, our kids and grandkids, are going to have a totally different way of thinking about this than we have now. That’s only because of the progress that’s been made since the mid-1970s. So that’s what I’m hoping to inculcate in viewers, that it is not as terrifying as it once was. It’s still scary, I’m not trying to minimize it. But we don’t have to fear this monster the way that our parents or grandparents might have had legitimate reason to fear it. It is not as fearsome a diagnosis as it once was.

It’s sort of like going under the bed and confronting the monster.

BG: Yes, if you confront this monster head on, you see what it really is. Sid called this book a biography of cancer and there is this very real feeling when you confront this disease that it must have a mind, because it is so devious, it’s so elusive and resilient that you almost feel like it’s toying with us. But when you really understand the science of it and how far they’ve come in understanding what causes it, and now really exciting things like immunotherapy are happening, where we’re fighting fire with fire in a sense. It loses all of that terror and fierceness. Not all. People I love have recently been diagnosed and it’s tremendously scary to hear that but at least now there are options, there are things you can do. For most cancers, not for all.

KB: Me, I would hope that everybody decides to join the resistance. That doesn’t mean everybody becomes an oncologist or a research scientist for cancer, but if a couple kids do that will be a wonderful thing. But I think it’s more just the general awareness that Sid performed in his work of literature, a kind of executive summary. Where we’ve been, where we are, and where we may be going. We’ve done a film version of that executive summary, and what’s nice is that even in the lag of when this film is coming out and when this book came out, a short five years, there’s been huge discoveries. Sid only nodded at immunotherapy, which is the whole last half -hour of our film. We’re no longer understanding that it’s helpful to remain ensiloed in your own specialty—there may be a unified theory, as Stephen Hawking would say, a theory of everything, that would govern cancer, that would help us move more aggressively into this.

I have one regret, and that is that I never figured out a way to avoid the metaphor of combat, of battle, of fight. Because if the enemy is us, it’s not a very good metaphor. We always talk, “He lost his battle with cancer.” “I’m going to fight this disease and not give up.” I just wish we were smart enough. We interviewed, as you saw, 50 of the smartest people on the planet, it’s probably the greatest concentration of IQ I’ve ever had in a film. And yet nobody could offer an alternative narrative. A friend of mine’s husband just died of cancer and in the obituary she said, “He died after a passionate engagement with life.” That was great, but you can’t do that in the context of a film on cancer. It’s a wonderful way to understand it. I think if we can find a new metaphor then maybe it won’t be that emperor anymore. It will be like the “pay no attention to that man behind the curtain.” The artifice dissolves if we can find a new metaphor. But that’s my failure—that’s our failure I think.

Just think about how you, how I, we get our information about cancer. It just comes in little spurts. Suddenly the nightly news announces, or suddenly there’s a lead story in this aggregated website and it’s about this about you go, “Oh whoa, that’s cool. I kind of get it.” Then you go to the next article and you have partial information and that quickly dissipates. So what if you could have a place that this is where we’ve been, this is where we are, we think we’re going here? At the end of the day, as terrifying as these stories are, as difficult as they are, the overwhelming thing that comes out of it is hope.

The film is extremely hopeful and I wouldn’t have done it if we couldn’t be hopeful. We turned something—childhood leukemia, 100 per cent fatal—is now 90 per cent curable. Wow. Most breast cancers, the life expectancy is really great. We have taken something and moved it from deadly to chronic, treatable. And now other cancers seem poised on that. So maybe it will, maybe it won’t.

The scientific process, It’s funny because as an artist, as a human, we forget how incredibly hard it is to fail 99 times out of 100 and to get that one thing where you go, “Oh well maybe it’s this.” Or as you see at the end of the film when a doctor is treating a patient and they’re killing her, she’s about to die from the treatment. They’re hours away from her death, and they need something that’s going to do something to her immune system. His own daughter has a juvenile arthritis, and the drug they give to her is the drug that does that to the body for juvenile arthritis, and he goes, “It’s our last hope.” So they administer it. And Emily [the patient] is walking around like a fine child today. Nothing’s wrong, she dives right out of that nosedive. But for his daughter having that, for him realizing that the properties that he wanted to happen with this leukemia was similar to what the drug his daughter was taking for this very rare childhood arthritis, Emily would be dead and he would be sitting there going, “Uh oh, maybe I shouldn’t do that anymore.” But now, that protocol is part of the treatment of that cancer. People are living accidentally. It’s great, it’s just unbelievable, and that’s an accident.

In particular, the first two-hour segment is toughest to watch because—

KB: Because of Luca, yeah. [Luca is a child whose condition rapidly deteriorates after years in remission. He is 8 years old in the documentary.]

Yeah, I wept.

KB: In fact, I did too. I’ve seen the audience weeping at things I’ve watched, but Luca became a real point of how much we could do. It was tough for us to edit that. It was tough for us to film that, it was tough to know when we’d crossed a line. I was the voice of less is more, we don’t need to be there, we don’t need to do that. It’s already such an extraordinary trauma and then you’re doubling it by having a film camera crew, however sensitive, in your face all the time. That just doesn’t apply to Luca’s family and Luca, but to everybody else that we have.

BG: The first segment in particular has a lot to do with children. Childhood leukemia was essentially the proving ground for early chemotherapy, largely because leukemia is the most accessible of all cancers—it’s the cancer of the blood, and it’s very easy to draw blood. That made children the guinea pigs for very difficult, toxic clinical trials. Sidney Farber and his successors [who are depicted in detail in the documentary] are to be admired, in one sense, for having the courage to push the boundaries of science. But when the subjects are children it becomes ethically difficult, it becomes a much tougher subject.

But we needed to go there. That is the story. We didn’t want to sugarcoat it or in any way rewrite history. Children were the guinea pigs in the early days of chemotherapy. Cancer is a vicious disease that usually attacks without cause, without identifiable behavioral cause. So it’s absolutely the case that the story of children drives that home. In our contemporary case studies, we chose to focus on two children’s cases because they would resonate with that history. On the one hand, we knew it would be somewhat difficult for some viewers to watch. On the other hand, it has to be the story we tell if we’re going to be true to the history. The good news is that childhood leukemia, thanks to these early researchers, is one of the great success stories in cancer history. It’s now one of the most curable kinds of cancer, and that is only a result of the difficult early history.

No one knew—not his doctors, not his family, no one expected that Luca’s case would go south like that. His prognosis was pretty good and his doctors expected that what they were doing would work with Luca. Even with the greatest doctors in the world—and these are the greatest doctors in the world—there’s no one course for this disease. Cancer is so unpredictable.

We had to be very careful and very sensitive about poking our camera into the most awful, traumatic moments of this family’s life. We decided—and I think it was the right decision—not to intrude at some of the really most awful times. As you saw in the film, we took some shots of him quite ill, but then we stopped and we pulled back and we decided not to follow this child down that awful road that he went down. The family didn’t explicitly tell us we weren’t welcome, but we didn’t need to be told. We could tell that at that point they didn’t want us around. It’s always a question of giving our viewers the story but not crossing an ethical line or a line of taste with these families.

How did you find your subjects, like Luca?

BG: We decided very early on that instead of trying to cherry-pick stories—finding the stories that hit a certain cubbyhole that we wanted to fill in the film—that wasn’t going to work. We needed to go deeply inside one or two institutions, ecosystems, because it was only in that way that we were going to earn the trust and get close enough to doctors and nurses and patients, to really get close to people. Otherwise it was going to be a once-over, generic kind of story.

And we chose wisely. We chose Johns Hopkins in Baltimore, because we wanted an institution that was a cutting-edge, a research hospital where everyone was on clinical trials, where we would get the specialists and the most recent, current stuff. But we also wanted a hospital that was more typical of the state of care in this country today. So we picked a very nice hospital, a very good hospital in West Virginia, the Charleston Area Medical center. Both institutions were incredibly cooperative, and we got very, very close with the doctors there. Through those doctors and nurses we met these patients and but for that, I don’t think the patients and the families would have been open to us in the same way had we not had the trust of their doctors and the institution.

As far as which patients we picked, it was kind of luck. We were there, we were there every day, our wonderful field producers, were there like furniture. When they would spot a case that looked interesting subjects that looked interesting, they would approach them through the hospital. [17-month old leukemia patient] Olivia was one such example. She came actually quite late in our process. She was brought in that night, our field producer was there with a camera to capture it, and the parents were incredibly open. So we went with it, but we also went with half a dozen or a dozen other stories that didn’t ultimately make it into the film.

Did you feel differently about cancer and this process people go through after making this film?

KB: Absolutely. We don’t talk about it. In the 1950s—Sid has a great story about this—a woman called the New York Times, the paper of record, and said, “I want to place an ad for support groups for women with breast cancer.” And she got put on hold and finally after ages and ages, some guy comes on from the society column and says, “You know, we don’t use the word breast and we don’t use the word cancer, but we’re happy to put an ad in the paper about support groups for people with diseases of the chest wall.”

So within my lifetime it has been a euphemism that you hid away. We still say “the big C” and nobody knows until they see our film, the layperson, why it’s called cancer—and nobody wants to ask. So this is the great demystification. It is about to become the biggest killer of us, passing heart disease. It’s certainly the scariest of all diseases and it’s because it is us.

If it is as Sid suggests the emperor of all maladies, borrowing from some 19th century, chilling name--hidden assassin, king of all terrors, emperor of all maladies--if it is that, then we’re all its subjects and we’re all required to become resistance workers. You know what it is? There’s a serial killer on the loose, and there is a detective story necessary, like “CSI.” But much more interesting and much more compelling than “CSI,” because one in two men and one in three women and one in three hundred children will get cancer.

BG: The history of cancer is the history of failure, mostly. The early treatments for this disease were brutal because they were desperate. There was nothing else to do. Halstead, who was the originator of the radical mastectomy, thought that was the only way to go. He was wrong, as it turns out, you find that out in the second episode. But they were desperate, they had to try something, anything, because this disease just kiled everybody it afflicted back in those dark days.

But we’ve learned something from those failures. It’s not a zero-sum game, you either win the battles or you lose the battles. Every time we thought we had this disease licked and we found out it was much more difficult than we had anticipated? Well, that pushed us closer to where we are now. It has been a kind of roller coaster, up and down, there have been lots of one step forward, two steps back kind of stuff, but the important thing is that hasn’t left us back where we’ve started. That has really brought us to today. So yes, we really wanted to tell that story in the film. That’s really how science works in general. It’s not this march of progress, it’s this zig-zag, and we really wanted to tell that story really clearly. Like, we have these moments of targeted therapy—“That’s the way we’re going to lick cancer. Whoops, all cancer can form resistance to targeted therapy.” So we learn from these moments of crushing disappointment.

Sid’s book is very poetic about cancer as being this dark reflection of ourselves. What does it mean to fight this, to eradicate cancer?

KB: This is the great challenge. Last night Sid was saying, “Ken made a film on the Civil War. This is the ultimate Civil War.” Harold Varmus, who had discovered the oncogene, the cancer-causing gene, when he accepted the Nobel Prize, he said, “This is the distorted version of ourselves.” In order to live, right now, you and I, our cells have to be dividing, so that’s it, that’s life. They divide cuckoo, that’s cancer and it will kill us. It’s like the old Pogo strip from the 1940s and 1950s that Walt Kelly wrote, Pogo. “We have met the enemy and he is us.”

That’s why I think cancer has been so stigmatized. We don’t know. We have all these questions and up until the 1970s we couldn’t answer many of the questions. How does it start? Is it a virus? Yes, sometimes. Is it environmental? Yes, sometimes. Quit smoking. Is it genetic? Yes, a lot of the time. Can you cut it out, as we’ve been doing for millennia? Yes. Can you zap it? Yes, and that might give you cancer, too. Can you poison it? Yeah, that’s counter-intuitive. Sidney Farber is sitting there with kids in Boston who have childhood leukemia, all of whom are going to die. His idea is why don’t we poison them? And it works for a while.

It’s a story of failure that leads to success and success that leads to blind hubris. We’ve always been on the cusp of the cure, and this is a great challenge. Medicine is the most human of the sciences and the most inhuman of the sciences. A randomized trial: Your baby is dying, we’ve got a new drug, if you join this trial you may get this drug. I won’t know whether you’ll get it until afterwards, but you maybe getting a placebo. And oh, by the way, this drug might have horrible side effects. When they list for five minutes, as we did consciously, the potential side effects for Olivia if she takes this drug, it’s not like a Viagra ad. This is like cognitive issues, and you see the father just break down and cry. He doesn’t want his daughter to become less smart than she is at 17 months.

BG: Cancer is never going to be eradicated because it is a perfection of our own biological drives to grow, to survive. So in many ways cancer is the culmination of an evolutionary force to exist. On the other hand, cancer kills us. So in that way it’s an absolute evolutionary monstrosity. That’s the rub of cancer. It is our evil, malevolent twin. Sid uses that metaphor at various times because all it is is our cells growing and dividing, only they’re doing so so successfully that they never die, so they kill us and then they all die. That’s what makes treating it and conquering it so difficult, because it’s not other, it’s ourselves.

I don’t think we will ever conquer cancer or eradicate cancer or even cure cancer, because those are slight misnomers. Curing cancer implies that there’s no cancer cells left in your body after a treatment and that they will never return, and there’s nothing that will ever guarantee that. So what we’re really talking about is containing cancer, and that’s what they’re becoming better and better at, so people live long enough to die of something else. But if we all lived long enough, we’d all die of cancer. It inevitably would crop up in our bodies at some point and overwhelm us. So it’s really about containing cancer, not curing cancer.

Was translating a Pulitzer Prize-winning book to film difficult?

BG: It was. I was sorely tempted simply to crib from Sid’s book many, many times. There’s just no better way of describing something or describing a person or describing the disease. I think he’s a genius. The guy is one of the greatest non-fiction prose stylists I’ve ever read. It’s one of the reasons I took this project on—I was just so blown away by the style of his writing and the quality of his mind expressed in the book. So it was a little intimidating, because we very much wanted some of that poetry in the series and we ended up getting some of it in through the animation that we used, which you saw less of in the first episode but there’s more later. But unfortunately the kind of prose that he writes doesn’t translate to television because in television you have to make everything as concise as possible and boil it down to its essence, and he doesn’t do that. But I was tempted to just say, “Can’t I just say it like he says it?” many, many times.

One of the things I found very striking—and depressingly not surprising—was the interview with the oncologist in Charleston, Dr. Cole.

KB: She’s my hero. Dr. [Suzanne] Cole is one of the most amazing human beings I’ve ever gotten to know. She isn’t a big-budget cancer researcher, she’s an oncologist. She’d treat poor people with 50 or 60 kinds of cancer and she’s sitting there pregnant, weeping over the fate of one of her patients, which doctors don’t do in front of anybody else, let alone cameras. She’s a tough cookie, I love her.

Her experience, along with the candid words from the director of the NIH, Dr. Francis Collins, who was saying it’s not always ideas or excitement that we’re limited by, it’s literally just funding. That struck me.

KB: Well, that’s what we’ve got to be doing. It begins with Dr. Cole, who introduces one of her patients to the facilitator at that Charleston medical center that’s going to help them negotiate the pressing financial piece of this. Which is absurd, since the same drug in other developed, western countries with health care, don’t cause people to decide whether they’re going to eat cat food or not pay their car payments or not pay their other things, rent.

The larger picture is why the hell Capitol Hill doesn’t, at this incredibly opportune moment, direct the resources of the United States government—which has put men on the moon, which has done extraordinary things!—and bring to bear the full force of one of the greatest entities on earth to push along this research. Along with prevention, along with healthy lifestyle, along with early diagnosis. All of the smart things that you could do to help yourself in the equation.

Is that one of your hopes for the film, too?

KB: You always want that, but we’re not in the advocacy business of anything. But hey, this is a really interesting and complicated story. The Egyptians knew about it and they wrote about it, lungs and the breast, and next to the treatment, there is no treatment. There is no treatment. There is no treatment. That just echoes down the centuries. Now, this is our obligation, to figure this puppy out.

By Sonia Saraiya

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