Emperor in Close-Up: A Talk With the Director

Barak Goodman; Harold J. Burstein, MD, PhD


March 24, 2015

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Editor's Note: Harold J. Burstein, MD, PhD, gets an oncologist's behind-the-cameras look at the making of Cancer: The Emperor of All Maladies, from Barak Goodman, director of the Ken Burns documentary, which will air on PBS on March 30, March 31, and April 1.

Harold J. Burstein, MD, PhD: Welcome. I'm Hal Burstein, a medical oncologist at Dana-Farber Cancer Institute in Boston, and I'm here today for Medscape, talking to Barak Goodman, who is the producer and director of the greatly anticipated Ken Burns production of Cancer: The Emperor of All Maladies,airing in the spring on PBS. Barak, thank you for being here today. This is the TV event of the spring—it's really exciting. I know you've been working on this for 2 years. How do you take a huge, 500-page book by Sid Mukherjee, which won the Pulitzer Prize, and turn that into a television show for a tremendous audience?

Barak Goodman: First of all, you have Sid's help—that's for sure. Sid was enormously helpful in guiding us through the epic book that he wrote and helping us to focus on what was most important. But it is a challenge. It's always difficult to boil any book down to a 2-hour, 4-hour, even a 6-hour series as ours is, but there is a central spine in Sid's book. There is a narrative that emerges out of a lot of other stories. That's what we focused on and that's basically what we told.

Dr Burstein: I understand that a lot of the impetus for making a TV production from this actually came from two very extraordinary women, both of whom had personally had cancer, who really grabbed this project and made it happen.

Mr Goodman: Indeed. Sharon Rockefeller is the head of WETA, the public broadcasting station in Washington, DC. Laura Ziskin is the founding mother of Stand Up To Cancer and a formidable Hollywood producer herself. She recently passed away of cancer. Both of these women had cancer, and Sharon was going through her treatment when the book came out. They both lapped up the book immediately. Laura optioned the book from Sid, but Sharon very quickly got in touch with Laura. The two of them worked out a way for PBS to be the production entity that would do the film. But these are two extraordinary women for whom this was personal. This was political. This was a mission. They are formidable people for whom very little is unattainable. They quickly convinced Sid, and the rest is history.

Dr Burstein: That's an interesting metaphor because a lot of the book talks about the scientific breakthroughs, but then it covers the importance of patient advocacy in catalyzing change in cancer care. That story captures some of that, doesn't it?

Mr Goodman: It does. It was very important to us. Sid, in the book, does have some contemporary stories on which he focuses. There are patients in the book, but they make cameo appearances. For the television series we wanted to emphasize the patient story much more centrally. We expanded that part of the book, and we were actually with patients for over more than a year. We embedded our crew at two different hospitals—one in Baltimore, one in West Virginia—and followed the story of patients as they went through their journeys.

It was important for us to give a picture of what it's like today to have cancer, to go through that experience and the variety of experiences that people can have.

In Praise of On-the-Ground Oncologists

Dr Burstein: Medical oncologists often think that they are the epicenter of the cancer narrative, but when you take a much broader literal picture, as a film producer would, and you follow the patients' trajectory as they go through their experience, who do you see as really the dominant players? How different does cancer look when you're in the clinic versus when you're at home? As doctors, we only get a small snippet, a snapshot of what the real experience of having cancer is like.

Mr Goodman: As you well know, cancer more and more these days is experienced at home. Thank goodness we're making some progress in treating cancer. A lot of patients end up not having to be in a hospital, but we actually wanted to take the picture of cancer from a variety of viewpoints. We do spend a lot of time with oncologists—some extraordinary oncologists, two in particular: a pediatric oncologist at Johns Hopkins in Baltimore and a general oncologist in West Virginia. We really focus very intently on their experience.

I have to say, just as a layperson coming into this field, I can't think of anything more difficult, more emotionally exhausting, more intellectually challenging than being an on-the-ground oncologist. I was totally inspired by these people and what they do every day with their lives. We were able to see the experience from these multiple points of view, which I think adds a lot of richness to the series.

One of the things that we learned is how important it is for oncologists to recognize the state of mind, the psychology of their patients. The particular oncologists that we focused on were extraordinarily sensitive about that.

I'm not an oncologist, but I'm sure it can get somewhat routine at times, like anything can. But for those patients, this is the most significant, most meaningful moment of their lives, and they do come with awe—awe of the power of these people, awe of the situation that's facing them.

Dr Burstein: As a doctor it's certainly true. That moment is what it's all about. There have been provider satisfaction surveys, and [oncologists] always say the thing that keeps them going is the relationship with the patient and how powerful that is. It is a great way of buffering the overwhelming logistics of care, the scientific need, and sometimes the heartache of the whole thing.

We spent years training to be oncologists, going through medical school and training afterwards. You [and your team] get a crash course in oncology. How do you quickly get up to speed so that you can really talk with true rigor about both the science and the clinical care that people are getting nowadays?

Cramming Oncology With Nobel Laureates

Mr Goodman: That was clearly the most difficult challenge. I don't pretend to be an oncologist or anything close, but we did really learn as much as we possibly could about the science. Fortunately, our job is to translate it to a lay audience, so we need to be dumb. We need to ask dumb questions and basic questions of people.

We were fortunate in having world-class scientists in the show. We probably have more Nobel Prize winners and world-class scientists than any film that's ever been put together. Those people were extraordinarily patient and skilled at translating what is, as your audience well knows, extremely complicated science, down to a level that we could understand first and then impart to our audience. We were fearful that these people would not be able to talk in a comprehensible way, but they were. They used metaphor. They simplified things. In the end the concepts, the basic concepts, are digestible and, I think, explainable.

Dr Burstein: I heard that you had some Nobel laureates dropping in to the studio to check on progress and keep you in line.

Mr Goodman: We are so grateful. We had Harold Varmus, who's got a day job [as director of the National Cancer Institute (NCI)], as our lead advisor. Robert Weinberg [professor of cancer research] at MIT also advised us. The two of them spent a huge amount of time coaching us, guiding us, translating for us. Harold would actually bike from his Upper West Side apartment to our Brooklyn offices. He did this three or four times, to come and sit in our offices in his bicycle suit and pick our brains: "What are we doing? Where are we going? Why are you doing this? Maybe you should look at that. Let me explain this to you." It was extraordinarily helpful.

Dr Burstein: That's a great response.

Mr Goodman: Very, very grateful to him.

Dr Burstein: You also brought in historical perspectives. I think the viewers might recognize from other Ken Burns productions the use of lots of still photographers, archival material. How did you find those materials and how did they enrich the narrative of the story?

Mr Goodman: We had a whole team of people whose sole job was to find the archive, and we made some great discoveries. There is a wonderful section of the film set at the NCI during the '60s and early '70s, where the original multidrug chemotherapy trials were going on for childhood leukemia. We were very concerned that we wouldn't be able to illustrate this visually, that we'd have to resort to generic photographs of some kind.

Instead, we found this trove of actual pictures of these trials, which brings them to life and conveys both the horror and the optimism and the frustration and the anxiety. All of those things come through the images.

Dr Burstein: One of the things I've really enjoyed as a professional in oncology has been that we're only one generation removed, really, from the individuals who founded the discipline. You can still talk to the people who were at the NCI when they were first giving aminopterin or 5-fluorouracil, or putting together the first clinical trials. It really speaks to people to hear what it took, how they had to invent things like what we call performance status or the design of a clinical study or the nature of randomization that would be employed. A lot of those principles really came out of that work, and these guys are still around.

Mr Goodman: Absolutely. And then we have Emil Freireich talking about those trials. We have David Nathan, who seemed to be everywhere in the story. First, he is the nephew of the man who basically funded Sidney Farber's original work. Then he shows up as a young scientist at the NCI during these trials, and then he shows up elsewhere. He Zelig-like crosses the entire series.

Newsreels of the 'Next Revolution'

Dr Burstein: As oncologists, there is a lot of focus on optimism and trying to help people do better. In fact, there was a great quote in Sid's book. I wanted to get it right because I thought it was so powerful. It was from William Dameshek, and he said, "With the development of therapeutics in the '40s and '50s, oncology sort of went from compassionate fatalism to aggressive optimism." Is that legitimate? Should we be so optimistic against what is still a very overwhelming disease? Do you balance that when you see patient narratives, some of whom are successful and some of whom don't do so well?

Mr Goodman: It's an extraordinary moment, isn't it? It's a moment for researchers that is extraordinarily optimistic. We heard this across the board. As Bert Vogelstein told us in the film, we've completed one revolution. That is the revolution of understanding. We understand cancer in a way, in a depth, comprehensively like we never have before. That lays a foundation, which never existed before, for the next revolution, which is a revolution in therapy, which your audience well knows is in process.

For the patient, though, it's this exquisitely confusing moment, because every day, every week there is another story on the front page of the New York Times that talks about a breakthrough. But why isn't it helping me? It's not helping me yet. There is sort of awful limbo for some patients. Maybe there is something out there that can help me, but where is it?

Dr Burstein: An example of that is this whole breakthrough in immunologic therapy, which happens while you're producing this show. You've scripted something about Cancer: The Emperor of All Maladies, and in the middle of that, in real time, a whole new discipline or subdiscipline emerges. How does the production team respond to capture that information?

Mr Goodman: We jumped all over that. It's true that Sid's book does little more than mention immunotherapy because it came out too early.

Dr Burstein: It came out of the blue.

Mr Goodman: We were at ASCO, I guess 3 years ago now, when the first papers were coming out,[1,2,3,4,5] and Yervoy® (ipilimumab) I think had been approved.[6] It was something that we zeroed in on right away. We got very excited about a trial at the NCI that Steven Rosenberg is running.[7] He, of course, is a pioneer in this field. We covered that trial, and one of the most powerful stories in the film takes place in that trial, but we were then quickly told by Sid and Harold and others, "You can't stop there. You've got to talk about Jim Allison's work[8] and what comes out of Jim Allison's work. Then Sid met the Whiteheads—Emily Whitehead [pediatric leukemia patient treated with] the CAR T-cell immunotherapy that came out of the University of Pennsylvania,[9,10] so we had to go do that story.

We were just following where the trail led us. It's really an important part of the film. The last 40 minutes of the third episode is all about immunotherapy, which really is, I think, the most exciting new frontier of therapy.

Telling a 100-Year-Old Story, Without Metaphor

Dr Burstein: I got a PhD in immunology a long time ago, and if you can find anybody back then who predicted that you would be able to de-repress the immune system in such a way to make it clinically relevant, I didn't hear them when I was in grad school.

Susan Sontag and others have written about the dangers of describing illness as a metaphor, and cancer has been the poster child for that problem. We've had the War on Cancer. Every patient who gets cancer battles cancer in a way. We talk about moon shots for cancer. How do you tell a 100-plus-year story of cancer, without resorting to too much metaphor, to make it seem more real to people?

Mr Goodman: You have to be straightforward and honest about the failures. I think that some of these metaphors are dangerous because they cloak what is actually a history of fits and starts in a narrative of forward progress, a linearity that isn't really true. I think we were very careful, and Sid was very insistent that we be honest about the ebb and flow of science, which is of course the way science works. As Robert Weinberg says in our piece, 95% of what you do as a scientist fails. It's only the last little 5% if you're lucky—if you're Robert Weinberg.

We were very careful to show that there has been this dynamic, not only in cancer but in all of science: a kind of fitful, punctuated success followed often by crushing disappointment. That's not to say—and it's important that we make this point—that we're just spinning our wheels. Every time that happens, underneath that there is forward progress and a kind of plus-gain in knowledge. I think where we are today is very different from when the War on Cancer was declared in the '70s

Dr Burstein: It gets back to the point you made about the patient who picks up the newspaper tomorrow and sees some headline about a breakthrough and says, why isn't this happening for me? It's because [the breakthrough] doesn't always apply to everybody and some of the progress is incremental or punctuated in such a way.

One of the challenges in the book was talking not so much about cancer therapeutics but about cancer prevention and screening. I would assume it's hard to film something that doesn't happen, as opposed to something that does happen. How do you capture that piece of this book, which clearly is a part of 21st-century thinking about cancer?

Backstory: Prevention and Patient Advocacy

Mr Goodman: We have a major section on the two aspects of prevention: prevention per se and early detection. Harold Varmus in particular was insistent that we have a very major section of the film devoted to this, and we've taken a historical approach as we do for every story. We go back to Bernardino Ramazzini and 18th century epidemiology and the study of workplace diseases. We talk about how that was a way of trying to find carcinogens in the environment, but again we are honest about the limitations of that. Some 40%, 50%, 60% of cancers are caused by unknown factors.

Although cancer prevention is probably the most promising avenue for a short-term fix for cancer, it's not a panacea. We're going to run up against the great unknown again, the 50% or 60% of cancers for which we can't pinpoint the cause. Then you get to early detection, and there is a similar story there. There's been great progress—colonoscopies, other kind of screenings—but then here is also a mystery: Mammography isn't precise enough yet; PSA isn't precise enough yet. There are cancers that slip through the net. We are honest, again, about what we can do and what we can't do yet.

Dr Burstein: Again, as a clinician, that's always a tremendous source of frustration to our patients. "I went for a mammogram every year; how come they didn't find this tumor when it was smaller?" I bet one of the real legacies of this kind of production will be that it awakens people to the importance of colonoscopy, to the importance of screening mammography, Pap smears, and other early-detection strategies.

Mr Goodman: We certainly hope so.

Dr Burstein: Talk to me a bit more about patient advocacy. Again, this was a tremendous theme in the late 20th century, when cancer patients and cancer advocates took this disease, made it theirs, and pushed for research priorities. How do you capture those stories in the show?

Mr Goodman: We especially see that in the breast cancer community, something that you're very familiar with. For various reasons, breast cancer is almost the poster child for patient advocacy.

For decades in the 20th century, women were served up on a platter almost, having radical mastectomies without even knowing that they were undergoing this operation. Thanks to Bernie Fisher, we know that the operation turned out to be of limited effectiveness[11,12] when compared with much smaller operations. Partly because of that history and as women gained authority in the culture, they took control of their own destinies and they became the most vocal patient advocates, advocates for themselves.

We see [advocacy] in the Solid Tumor Autologous Marrow Program [STAMP] trials, the growing use of bone marrow transplantation and high-dose chemotherapy [for treatment of breast cancer] during the '80s and '90s,[13,14,15,16] which ironically had a negative effect. [We see patient advocacy] in the Herceptin® (trastuzumab) story, where patients demanded that Genentech release this drug more widely. Herceptin was in a very small, controlled study and advocates [lobbied Genentech] and achieved a lottery so that other women would be able to get access to the drug.[17] We see example after example of how patients were the most effective advocates for their own disease.

Dr Burstein: This strikes me as a particularly American experience. I have the privilege of going around the world and talking to people about cancer, and you don't see that same kind of grassroots advocacy, which now exists in prostate cancer, myeloma, leukemia, and every major cancer subtype, along with lots of other diseases. You don't see that so much in Europe, Asia, or other places yet. It's a uniquely American contribution to the story, I think.

Mr Goodman: I think you need a political system in which one's collective voice can be heard. These folks took advantage of that, to a huge extent.

Cameras in Two Clinical Climates

Dr Burstein: As part of the production, you were in very different clinical climates. You were in the Kimmel Cancer Center at Johns Hopkins—obviously, a world-class, high-powered academic center—and you were also in community hospitals in West Virginia. What's different about cancer patients and cancer care in those settings?

Mr Goodman: You know, it's different and it's not different. I think upwards of 60% or 70% of the patients at Johns Hopkins are in clinical trials. You don't see the same number of patients in clinical trials in a place like West Virginia, although the care is extraordinarily good even so. What tends to be different is the degree of specialization. At the Charleston Area Medical Center there were eight full-time, on-staff oncologists for hundreds and hundreds of patients. They saw every kind of cancer. Whereas at Johns Hopkins, there were specialists and subspecialists.

Dr Burstein: I see ALL, I see CLL. You see AML.

Mr Goodman: We have a wonderful scene in the film where we have one patient we're following [at Johns Hopkins], a young child with leukemia. There is a scene in which six specialists are all looking at the microscope at the same time, all lifting up their heads and talking to each other. That's just not something you see elsewhere.

There are pluses and minuses. The personal relationship between the doctor we're following in Charleston and her patients is extraordinary, and perhaps closer than is possible for the doctors at Hopkins when they're running clinical trials. There are upsides and downsides to both [types of centers].

Dr Burstein: I gather that one of the clinicians you are following during the production develops cancer.

Mr Goodman: Yes.

Dr Burstein: That must have been almost surreal, but a very powerful moment. Did you keep filming? What do you do? What did you learn from that kind of moment?

Mr Goodman: In truth, we found her after she'd been diagnosed, but just after. We were looking for a breast cancer case in which we would be able to see the moment of diagnosis. That's virtually impossible. We ended up following Dr Lori Wilson, maybe days after her diagnosis. It wasn't that we set out to find a breast cancer specialist who herself had breast cancer, but having found her, it added so many layers to her story and so much richness—the ways in which she would change as a result of having the disease herself. And as it happened, she turned out to be a fantastic "character" for us. We were lucky.

Dr Burstein: Sadly, we've all known colleagues who've been diagnosed with cancer or other problems. It's a really hard thing when the doctor is the patient. But if you can capture that, there's got to be something there that we can all take away from such an experience, about the humanity of it and the very personal integration of science and clinical care—the humanism of the profession.

Mr Goodman: Absolutely. Fortunately, her story turns out well, but she was scared by that disease. All the layers of that professional armament, or whatever you call it, were gone. She was just this vulnerable human being. Sure, she knew a little bit more about the course of her disease, but the way in which she put herself in the hands of her doctor... It goes back to what I said earlier about this moment of awe, where she's just another person with this disease, and the power that the oncologist and the scientists who take up her case have is really remarkable to see.

Patient Focus: Shared Experience, Expense

Dr Burstein: What did you learn about the infusion space? I've often thought that there was a great book or something to be written about the shared experience of patients getting chemotherapy at the same time, sharing their stories. We hear all the time, "You know, I saw so-and-so in the waiting area; why aren't I getting this? I ran into my friend here." Tell us a little bit about that perspective.

Mr Goodman: It's funny that you mention that, because I noticed that myself. We filmed in the infusion areas at both Hopkins and Charleston Area Medical Center. There is a commonality to the experience. But I wouldn't say a camaraderie; that's not quite the right word.

Dr Burstein: It's shared. It's one of the few medical experiences that you go through alongside other people.

Mr Goodman: You look to your left, you look to your right. There's an older person, there's a person of a different [background]. You're in this together, in a way.

Dr Burstein: I wonder whether you had a chance to talk to people about the costs of cancer care. With the extraordinary progress there's also been the realization that it's very expensive to take care of cancer patients. These newer drugs that are coming onto the market have prices (along with activity) that have never been seen before: $75,000 to $150,000 for a course of therapy for a patient. Drugs that have been around for a while, such as imatinib, which actually is an extraordinary drug, are more expensive than they were 15 years ago, even though there are better derivatives that have come along. What did you see there, and how does that inform your own feelings about the policies and the costs of cancer care?

Mr Goodman: We did address that. We didn't go deeply into the controversy. It would have consumed too much of the show. We definitely show a chart in the film of the last dozen or two dozen approved cancer drugs, and they are all over $100,000 a year—something like that. We talk about the awful decisions that this foists on people. It would be one thing if these cancer drugs saved your life and you were fine, but as you well know, in many cases they just prolong your life in some cases by a few months.

Then there is the question of whether it is worth it. Do I pay this money for a few months of extra life? Do I consume my savings? If I don't have insurance or even if I do have insurance, is it worth it? We have interesting discussions about that in the film, about this dilemma that the cost of cancer drugs foists on patients. That leads us to consider palliative care, which is something that isn't often talked about by oncologists but is, I think, growing as a movement and as a part of the way oncologists must practice their craft.

Dr Burstein: Hopefully not simply as a consequence of access to drugs but because of the limitations of those drugs [to provide the patients] further benefit].

Mr Goodman: Exactly.

The Essential Relationship: Doctor and Patient

Dr Burstein: I want to close by acknowledging that you've had this very unusual vantage point to watch the doctor-patient interaction intensely for a couple of years. I guess you don't make film footage anymore, but it would have been millions of feet of film, I suppose, instead of however many reams of gigabytes or terabytes or whatever it is.

With that perspective and an audience here of medical professionals and allied healthcare specialists, what's the one thing you would tell us? We think of ourselves as heroic figures in this cancer play, but what would you tell us about what we actually need to know? And conversely, what would you tell a patient who is embarking on a cancer journey? What should they know about oncologists that would be helpful for them?

Mr Goodman: That's a great question. From the point of view of the oncologist, what we noticed was how much in awe, as I said before, these patients are and how much they entrust to the oncologists. It was awful on the few occasions when we saw oncologists dismiss that, or not recognize that, or be cavalier in the way they treated patients. That was awful to see. Most of the time (fortunately because of the people we chose), we saw the opposite. We saw the recognition of that vulnerability of patients.

As Sid says in the beginning of episode two, this is not one of the most essential relationships. This is the essential relationship, the relationship between a doctor and a patient in a moment in which a patient is facing this kind of diagnosis. It's tremendously important that oncologists understand the mental and emotional state of their patients, which is so vulnerable, so scared, so frightened, and the need to bring these people along with honesty and with frankness, but with enormous sensitivity.

From the other side, I think the important thing for patients to realize is how much of medicine—and this was a shock to me—is intuitive. It's more art than science. These folks don't know everything.

I think that patients need to know that they need multiple opinions, second opinions, third opinions, but that also there are limitations to what that doctor across from you knows or can do for you. [You should] not despair or take from that a sort of pessimistic point of view. But just be aware that this is not the omniscient Wizard of Oz. This is somebody who's a human being with limitations and you need to be an advocate for yourself. Your family needs to be an advocate for you. The most effective patients I saw were people who became amateur oncologists themselves, who read and learned about their cases. In some cases it really helped them.

Dr Burstein: I think that's a really good point, that the medical team doesn't know everything. We know that, we even admit it, but it's hard to really wrap your mind around that when you're so dependent on them.

Mr Goodman: Exactly.

Dr Burstein: For your moment-to-moment existence, as it were, and certainly for your care as a cancer patient. Thank you so much for speaking with us today. It's been really exciting to think about this show and what it's going to offer medical oncologists, who I know are excited about this and who have been reading the book for years now, but also the general public.

Mr Goodman: Thank you so much for having me.


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