A Whipple of Choice: Choosing Between Debilitating Surgery or Watchful Waiting
Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "A Whipple of Choice” by Dr. Carl Forsberg, who is an Assistant Professor of Strategy and History at Air Force War College. The article is followed by an interview with Forsberg and host Dr. Mikkael Sekeres. Dr Forsberg shares his experience with an uncommon cancer treated by a new therapy for which no directly relevant data were available. Transcript Narrator: A Whipple of Choice, by C. W. Forsberg, PDH I sat across from a hepatobiliary surgeon on a gray October afternoon. “To be frank,” he told me, “we don’t know what to recommend in your case. So we default to being conservative. That means a Whipple surgery, even though there are no data showing it will improve your outcome.” The assessment surprised me, diverging from my expectation that doctors provide clear recommendations. Yet the surgeon’s willingness to structure our conversation around the ambiguity of the case was immensely clarifying. With a few words he cut through the frustrations that had characterized previous discussions with other physicians. I grasped that with an uncommon cancer treated by a novel therapy with no directly relevant data, I faced a radical choice. My situation that afternoon was worlds away from where I was 5 months earlier, when I was diagnosed with presumed pancreatic cancer at the age of 35. An early scan was suspicious for peritoneal metastasis. The implications seemed obvious. I prepared myself for the inevitable, facing my fate stoically except in those moments when I lingered next to my young son and daughter as they drifted to sleep. Contemplating my death when they were still so vulnerable, I wept. Then the specter of death retreated. Further tests revealed no metastasis. New doctors believed the tumor was duodenal and not pancreatic. More importantly, the tumor tested as deficient mismatch repair (dMMR), predictable in a Lynch syndrome carrier like me. In the 7 years since I was treated for an earlier colon cancer, immune checkpoint inhibitor (ICI) immunotherapy had revolutionized treatment of dMMR and high microsatellite instability tumors. One oncologist walked me through a series of recent studies that showed extraordinary responses to ICI therapy in locally advanced colon and rectal tumors with these biomarkers.1-4 He expressed optimism that my cancer could have a similar response. I embarked on a 24-week course of nivolumab and ipilimumab. After 6 weeks of therapy, a computed tomography (CT) scan showed a significant reduction in tumor size. My health rebounded as the tumor receded. This miraculous escape, however, was bound by the specter of a Whipple surgery, vaguely promised 6 months into my treatment. At the internationally renowned center where I was diagnosed and began treatment with astonishing efficiency, neither oncologists nor surgeons entertained the possibility of a surgery-sparing approach. “In a young, healthy patient like you we would absolutely recommend a Whipple,” my first oncologist told me. A second oncologist repeated that assessment. When asked if immunotherapy could provide a definitive cure, he replied that “if the tumor disappeared we could have that conversation.” My charismatic surgeon exuded confidence that I would sail through the procedure: “You are in excellent health and fitness—it will be a delicious surgery for me.” Momentum carried me forward in the belief that surgery was out of my hands. Four months into treatment, I was jolted into the realization that a Whipple was a choice. I transferred my infusions to a cancer center nearer my home, where I saw a third oncologist, who was nearly my age. On a sunny afternoon, 2 months into our relationship, he suggested I think about a watch-and-wait approach that continued ICI therapy with the aim of avoiding surgery. “Is that an option?” I asked, taken aback. “This is a life-changing surgery,” he responded. “You should consider it.” He arranged a meeting for me with his colleague, the hepatobiliary surgeon who clarified that “there are no data showing that surgery will improve your outcome.” How should patients and physicians make decisions in the absence of data? My previous experience with cancer offered little help. When I was diagnosed with colon cancer at the age of 28, doctors made clear recommendations based on clear evidence. I marched through surgery and never second-guessed my choices. A watch-and-wait approach made sense to me based on theory and extrapolation. Could duodenal tumors treated by ICIs behave that differently from colorectal cancers, for which data existed to make a watch-and-wait approach appear reasonable? The hepatobiliary surgeon at the regional cancer center told me, “I could make a theoretical argument either way and leave you walking out of here convinced. But we simply don’t know.” His comment reflects modern medicine’s strict empiricism, but it foreclosed further discussion of the scientific questions involved and pushed the decision into the realm of personal values. Facing this dilemma, my family situation drove me toward surgery despite my intuition that immunotherapy could provide a definitive cure. The night before I scheduled my Whipple procedure, I wrote in my journal that “in the face of radical uncertainty one must resort to basic values—and my priority is to survive for my children. A maimed, weakened father is without doubt better than no father at all.” To be sure, these last lines were written with some bravado. Only after the surgery did I viscerally grasp that the Whipple was a permanent maiming of the GI system. My doubts lingered after I scheduled surgery, and I had a final conversation with the young oncologist at the cancer center near my home. We discussed a watch-and-wait approach. A small mass remained on CT scans, but that was common even when tumors achieved a pathological complete response.5 Another positron emission tomography scan could provide more information but could not rule out the persistence of lingering cancer cells. I expressed my low risk tolerance given my personal circumstances. We sat across from one another, two fathers with young children. My oncologist was expecting his second child in a week. He was silent for moments before responding “I would recommend surgery in your situation.” Perhaps I was projecting, but I felt the two of us were in the same situation: both wanting a watch-and-wait approach, both intuitively believing in it, but both held back by a sense of parental responsibility. My post-surgery pathology revealed a pathological complete response. CT scans and circulating tumor DNA tests in the past year have shown no evidence of disease. This is an exceptional outcome. Yet in the year since my Whipple, I have been sickened by my lack of gratitude for my good fortune, driven by a difficult recovery and a sense that my surgery had been superfluous. Following surgery, I faced complications of which I had been warned, such as a pancreatic fistula, delayed gastric emptying, and pancreatic enzyme insufficiency. There were still more problems that I did not anticipate, including, among others, stenoses of arteries and veins due to intraabdominal hematomas, persistent anemia, and the loss of 25% of my body weight. Collectively, they added up to an enduringly dysfunctional GI system and a lingering frailty. I was particularly embittered to have chosen surgery to mitigate the risk that my children would lose their father, only to find that surgery prevented me from being the robust father I once was. Of course, had I deferred surgery and seen the tumor grow inoperable or metastasize between scans, my remorse would have been incalculably deeper. But should medical decisions be based on contemplation of the most catastrophic consequences, whatever their likelihood? With hindsight, it became difficult not to re-examine the assumptions behind my decision. Too often, my dialogue with my doctors was impeded by the assumption that surgery was the obvious recommendation because I was young and healthy. The assumption that younger oncology patients necessarily warrant more radical treatment deserves reassessment. While younger patients have more years of life to lose from cancer, they also have more years to deal with the enduring medical, personal, and professional consequences of a life-changing surgery. It was not my youth that led me to choose surgery but my family situation: 10 years earlier, my youth likely would have led me to a watch-and-wait approach. The rising incidence of cancer among patients in their 20s and 30s highlights the need for a nuanced approach to this demographic. Calculations on surgery versus a watch-and-wait approach in cases like mine, where there are no data showing that surgery improves outcomes, also require doctors and patients to account holistically for the severity of the surgery involved. Multiple surgeons discussed the immediate postsurgical risks and complications of a pancreaticoduodenectomy, but not the long-term challenges involved. When asked to compare the difficulty of my prior subtotal colectomy with that of a pancreatoduodenectomy, the surgeon who performed my procedure suggested they might be similar. The surgeon at the regional cancer center stated that the Whipple would be far more difficult. I mentally split the difference. The later assessment was right, and mine was not a particularly bad recovery compared with others I know. Having been through both procedures, I would repeat the subtotal colectomy for a theoretical oncologic benefit but would accept some calculated risk to avoid a Whipple. Most Whipple survivors do not have the privilege of asking whether their surgery was necessary. Many celebrate every anniversary of the procedure as one more year that they are alive against the odds. That I can question the need for my surgery speaks to the revolutionary transformation which immunotherapy has brought about for a small subset of patients with cancer. The long-term medical and personal consequences of surgery highlight the urgent stakes of fully understanding and harnessing the life-affirming potential of this technology. In the meantime, while the field accumulates more data, potentially thousands of patients and their physicians will face difficult decisions on surgery verses a watch and- wait approach in cases of GI tumors with particular biomarkers showing exceptional responses to ICI therapy.7,8 Under these circumstances, I hope that all patients can have effective and transparent conversations with their physicians that allow informed choices accounting for their risk tolerance, calculations of proportionality, and priorities. Dr. Mikkael Sekeres: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Dr. Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center at University of Miami. Today, we are so happy to be joined by Dr. Carl Forsberg, Assistant Professor of Strategy and History at the Air Force War College. In this episode, we will be discussing his Art of Oncology article, "A Whipple of Choice." At the time of this recording, our guest has no disclosures. Carl, it is such a thrill to welcome you to our podcast, and thank you for joining us. Dr. Carl Forsberg: Well, thank you, Mikkael, for having me. I'm looking forward to our conversation. Dr. Mikkael Sekeres: So am I. I wanted to start, Carl, with just a little bit of background about you. It's not often we have a historian from the Air Force College who's on this podcast. Can you tell us about yourself, where you're from, and walk us through your career? Dr. Carl Forsberg: Sure. I was born and raised in Minnesota in a suburb of Minneapolis-St. Paul and then went to undergraduate on the East Coast. I actually started my career working on the contemporary war in Afghanistan, first as an analyst at a DC think tank and then spent a year in Kabul, Afghanistan, on the staff of the four-star NATO US headquarters, where I worked on the vexing problems of Afghanistan's dysfunctional government and corruption. Needless to say, we didn't solve that problem. Dr. Mikkael Sekeres: Wow. Dr. Carl Forsberg: I returned from Afghanistan somewhat disillusioned with working in policy, so I moved into academia, did a PhD in history at the University of Texas at Austin, followed by postdoctoral fellowships at Harvard and Yale, and then started my current position here at the Air Force War College. The War Colleges are, I think, somewhat unusual, unique institutions. Essentially, we offer a 1-year master's degree in strategic studies for lieutenant colonels and colonels in the various US military services. Which is to say my students are generally in their 40s. They've had about 20 years of military experience. They're moving from the operational managerial levels of command to positions where they'll be making strategic decisions or be strategic advisors. So we teach military history, strategy, international relations, national security policy to facilitate that transition to a different level of thinking. It really is a wonderful, interesting, stimulating environment to be in and to teach in. So I've enjoyed this position here at the War College quite a lot. Dr. Mikkael Sekeres: Well, I have to tell you, as someone who's been steeped in academic medicine, it sounds absolutely fascinating and something that I wouldn't even know where to start approaching. We have postdoctoral fellowships, of course, in science as well. What do you do during a postdoctoral fellowship in history and strategy? Dr. Carl Forsberg: It's often, especially as a historian, it's an opportunity to take your dissertation and expand it into a book manuscript. So you have a lot of flexibility, which is great. And, of course, a collegial environment with others working in similar fields. There are probably some similarities to a postdoc in medicine in terms of having working groups and conferences and discussing works in progress. So it was a great experience for me. My second postdoc occurred during the pandemic, so it turned out to be an online postdoc, a somewhat disappointing experience, but nevertheless I got a lot out of the connections and relationships I formed during those two different fellowships. Dr. Mikkael Sekeres: Well, there are some people who used the pandemic as an excuse to really just plow into their writing and get immersed in it. I certainly wrote one book during the pandemic because I thought, “Why not? I'm home. It's something where I can use my brain and expand my knowledge base.” So I imagine it must have been somewhat similar for you as you're thinking about expanding your thesis and going down different research avenues. Dr. Carl Forsberg: I think I was less productive than I might have hoped. Part of it was we had a 2-year-old child at home, so my wife and I trying to, you know, both work remotely with a child without having childcare really for much of that year given the childcare options fell through. And it was perhaps less productive than I would have aspired for it to be. Dr. Mikkael Sekeres: It's terrifically challenging having young children at home during the pandemic and also trying to work remotely with them at home. I'm curious, you are a writer, it's part of your career, and I'm curious about your writing process. What triggers you to write a story like you did, and how does it differ from some of your academic writing? Dr. Carl Forsberg: Yeah. Well, as you say, there is a real difference between writing history as an academic and writing this particular piece. For me, for writing history, my day job, if you will, it's a somewhat slow, painstaking process. There's a considerable amount of reading and archival work that go into history. I'm certainly very tied to my sources and documents. So, you know, trying to get that precision, making sure you've captured a huge range of archival resources. The real narrative of events is a slow process. I also have a bad habit of writing twice as much as I have room for. So my process entailed a lot of extensive revisions and rewriting, both to kind of shorten, to make sure there is a compelling narrative, and get rid of the chaff. But also, I think that process of revision for me is where I often draw some of the bigger, more interesting conclusions in my work once I've kind of laid out that basis of the actual history. Certainly, writing this article, this medical humanities article, was a very different experience for me. I've never written something about myself for publication. And, of course, it was really driven by my own experiences of going through this cancer journey and recovering from Whipple surgery as well. The article was born during my recovery, about 4 months after my Whipple procedure. It was a difficult time. Obviously kind of in a bad place physically and, in my case, somewhat mentally, including the effects of bad anemia, which developed after the surgery. I found it wasn't really conducive to writing history, so I set that aside for a while. But I also found myself just fixating on this question of had I chosen a superfluous Whipple surgery. I think to some extent, humans can endure almost any suffering with a sense of purpose, but when there's a perceived pointlessness to the suffering, it makes it much harder. So for me, writing this article really was an exercise, almost a therapeutic one, in thinking through the decisions that led me to my surgery, addressing my own fixation on this question of had I made a mistake in choosing to have surgery and working through that process in a systematic way was very helpful for me. But it also, I think, gave me- I undertook this with some sense of perhaps my experience could be worthwhile and helpful for others who would find themselves in a situation like mine. So I did write it with an eye towards what would I like to have read? What would I like to have had as perspective from another patient as I grappled with the decision that I talk about in the article of getting a Whipple surgery. Dr. Mikkael Sekeres: So I wonder if I could back up a little bit. You talk about the difficulty of undergoing a Whipple procedure and of recovery afterwards, a process that took months. And this may come across as a really naive question, but as, you know, as an oncologist, my specialty is leukemia, so I'm not referring people for major surgeries, but I am referring them for major chemotherapy and sometimes to undergo a bone marrow transplant. Can you educate us what makes it so hard? Why was it so hard getting a Whipple procedure, and what was hard about the recovery? Dr. Carl Forsberg: Yeah, it was a long process. Initially, it was a 14-day stay in the hospital. I had a leaking pancreas, which my understanding is more common actually with young, healthy patients just because the pancreas is softer and more tender. So just, you know, vast amount of pancreatic fluid collecting in the abdominal cavity, which is never a pleasant experience. I had a surgical drain for 50-something days, spent 2 weeks in the hospital. Simply eating is a huge challenge after Whipple surgery. I had delayed gastric emptying for a while afterwards. You can only eat very small meals. Even small meals would give me considerable stomach pain. I ended up losing 40 lb of weight in 6 weeks after my surgery. Interestingly enough, I think I went into the surgery in about the best shape I had been in in the last decade. My surgeon told me one of the best predictors for outcomes is actual muscle mass and told me to work out for 2 hours every day leading up to my surgery, which was great because I could tell my wife, "Sorry, I'm going to be late for dinner tonight. I might die on the operating table." You can't really argue with that justification. So I went in in spectacular shape and then in 6 weeks kind of lost all of that muscle mass and all of the the strength I had built up, which just something discouraging about that. But just simply getting back to eating was an extraordinarily difficult process, kind of the process of trial and error, what worked with my system, what I could eat without getting bad stomach pains afterwards. I had an incident of C. diff, a C. diff infection just 5 weeks after the surgery, which was obviously challenging. Dr. Mikkael Sekeres: Yeah. Was it more the pain from the procedure, the time spent in the hospital, or psychologically was it harder? Dr. Carl Forsberg: In the beginning, it was certainly the physical elements of it, the difficulty eating, the weakness that comes with losing that much weight so quickly. I ended up also developing anemia starting about two or 3 months in, which I think also kind of has certain mental effects. My hemoglobin got down to eight, and we caught it somewhat belatedly. But I think after about three or 4 months, some of the challenges became more psychological. So I started to physically recover, questions about going forward, how much am I going to actually recover normal metabolism, normal gastrointestinal processes, a question of, you know, what impact would this have long-term. And then, as I mentioned as well, some of the psychological questions of, especially once I discovered I had a complete pathological response to the immunotherapy, what was the point to having this surgery? Dr. Mikkael Sekeres: And the way you explore this and revisit it in the essay is absolutely fascinating. I wanted to start at the- towards the earlier part of your essay, you write, "The surgeon's willingness to structure our conversation around the ambiguity of the case was immensely clarifying." It's fascinating. The ambiguity was clarifying to you. And the fact that you appreciated the fact that the surgeon was open to talking about this ambiguity. When do you think it's the right thing to acknowledge ambiguity in medicine, and when should we be more definitive? When do you just want someone to tell you, “Do this or do that?” Dr. Carl Forsberg: That's a great question, which I've thought about some. I think some of it is, I really appreciated the one- a couple of the oncologists who brought up the ambiguity, did it not at the beginning of the process but a few months in. You know, the first few months, you're so as a patient kind of wrapped up in trying to figure out what's going on. You want answers. And my initial instinct was, you know, I wanted surgery as fast as possible because you want to get the tumor out, obviously. And so I think bringing up the ambiguity at a certain point in the process was really helpful. I imagine that some of this has to do with the patient. I'm sure for oncologists and physicians, it's got to be a real challenge assessing what your patient wants, how much they want a clear answer versus how much they want ambiguity. I've never obviously been in the position of being a physician. As a professor, you get the interesting- you start to realize some students want you to give them answers and some students really want to discuss the ambiguities and the challenges of a case. And so I'm, I imagine it might be similar as a physician, kind of trying to read the patient. I guess in my case, the fact was that it was an extraordinarily ambiguous decision in which there wasn't data. So I think there is an element, if the data gives no clear answers, that I suppose there's sort of an ethical necessity of bringing that up with the patient. Though I know that some patients will be more receptive than others to delving into that ambiguity. Dr. Mikkael Sekeres: Well, you know, it's an opportunity for us to think holistically about our patients, and you as a patient to think holistically about your health and your family and how you make decisions. I believe that when we're in a gray zone in medicine where the data really don't help guide one decision versus the next, you then lean back towards other values that you have to help make that decision. You write beautifully about this. You say, "In the face of radical uncertainty, one must resort to basic values, and my priority is to survive for my children. A maimed, weakened father is without doubt better than no father at all." That's an incredibly deep sentiment. So, how do you think these types of decisions about treatment for cancer change over the course of our lives? You talk a lot about how you were a young father in this essay, and it was clear that that was, at least at some point, driving your decision. Dr. Carl Forsberg: Yeah, I certainly have spent a lot of time thinking about how I would have made this decision differently 10 years earlier. As I mentioned the article, it was interesting because most of my physicians, honestly, when they were discussing why surgery made sense pointed to my age. I don't think it was really my age. Actually, when I was 23, I went off to Afghanistan, took enormous risks. And to some extent, I think as a young single person in your 20s, you actually have generally a much higher risk tolerance. And I think in that same spirit, at a different, earlier, younger stage in my life, I would have probably actually been much more willing to accept that risk, which is kind of a point I try to make, is not necessarily your age that is really the deciding factor. And I think once again, if I were 70 or 60 and my children, you know, were off living their own lives, I think that also would have allowed me to take, um, greater risk and probably led me to go for a watch-and-wait approach instead. So there was a sense at which not the age, but the particular responsibilities one has in life, for me at least, figured very heavily into my medical calculus. Dr. Mikkael Sekeres: It's so interesting how you define a greater risk as watch and wait, whereas a surgeon or a medical oncologist who's making recommendations for you might have defined the greater risk to undergo major surgery. Dr. Carl Forsberg: And I thought about that some too, like why is it that I framed the watch and wait as a greater risk? Because there is a coherent case that actually the greater risk comes from surgery. I think when you're facing a life and death decision and the consequence, when you have cancer, of course, your mind goes immediately to the possibility of death, and that consequence seems so existential that I think it made watch and wait perhaps seem like the riskier course. But that might itself have been an assumption that needed more analysis. Dr. Mikkael Sekeres: Do you think that your doctor revealing that he also had young children at home helped you with this decision? Dr. Carl Forsberg: I think in some ways for a doctor it's important to kind of understand where your patient is in their own life. As a patient, it was interesting and always helpful for me to understand where my physicians were in their life, what was shaping their thinking about these questions. So I don't know if it in any way changed my decision-making, but it definitely was important for developing a relationship of trust as well with physicians that we could have that mutual exchange. I would consider one of my primary oncologists, almost something of a friend at this point. But I think it really was important to have that kind of two-way back and forth in understanding both where I was and where my physician was. Dr. Mikkael Sekeres: I like how you frame that in the sense of trust and hearing somebody who could make similar considerations to you given where he was in his family. One final question I wanted to ask you. You really elegantly at the end of this essay talk about revisiting the decision. I wonder, is it fair to revisit these types of decisions with hindsight, or do we lose sight of what loomed as being most important to us when we were making the decisions in real time? Dr. Carl Forsberg: That's a great question, one that is also, I think, inherent to my teaching. I teach military history for lieutenant colonels and colonels who very well may be required, God willing not, but may be required to make these sort of difficult decisions in the case of war. And we study with hindsight. But one thing I try to do as a professor is put them in the position of generals, presidents, who did not have the benefit of hindsight, trying to see the limits of their knowledge, use primary source documents, the actual memos, the records of meetings that were made as they grappled with uncertainty and the inherent fog of war. Because it is, of course, easy to judge these things in hindsight. So definitely, I kept reminding myself of that, that it's easy to second guess with hindsight. And so I think for me, part of this article was trying to go through, seeing where I was at the time, understanding that the decision I made, it made sense and with what I knew, it was probably the right decision, even if we can also with hindsight say, "Well, we've learned more, we have more data." A lot of historical leaders, it's easy to criticize them for decisions, but when you go put yourself in their position, see what the alternatives were, you start to realize these were really hard decisions, and I would have probably made the same disastrous mistake as they would have, you know. Let’s just say the Vietnam War, we have our students work through with the original documents decisions of the Joint Chiefs in 1965. They very frequently come to the exact same conclusions as American policymakers made in 1965. It is a real risk making judgments purely on the basis of hindsight, and I think it is important to go back and really try to be authentic to what you knew at the time you made a decision. Dr. Mikkael Sekeres: What a great perspective on this from a historian. Carl Forsberg, I'd like to thank you, and all of us are grateful that you were willing to share your story with us in The Art of Oncology. Dr. Carl Forsberg: Well, thank you, and it's yeah, it's been a, it's a, I think in some ways a very interesting and fitting place to kind of end my cancer journey with the publication of this article, and it's definitely done a lot to help me work through this entire process of going through cancer. So, thank you. Dr. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Until next time, thank you so much. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show notes:Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Carl Forsberg is a Assistant Professor of Strategy and History at the Air Force War College.
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