EP. 115: CANCER AS A FAMILY AFFAIR

WITH MARK LEWIS

Jun 4

WITH MARK LEWIS, MD

An oncologist shares his perspective on resilience, grace, and hope in the face of suffering — as the son of a cancer patient, as a cancer patient himself, and as a father of a child with an inherited predisposition to cancer.

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Episode Summary

For Mark Lewis, MD, cancer has defined his entire life. Growing up, he witnessed his father's valiant struggle with cancer before it eventually ended his life. While still in medical training, he not only developed pancreatic cancer but also discovered the culprit. Multiple endocrine neoplasia type 1, an inherited syndrome that drastically increases one's risk of cancers, runs in his family. So now, as a father, he guides his son in making sense of a life burdened with that risk. What’s more, as an oncologist, Dr. Lewis has also dedicated his professional life to understanding and treating cancers of the gastrointestinal system.

In this deeply personal conversation filled with pathos, wisdom, and hope, Dr. Lewis shares how he learned to cope with the rage he felt towards cancer in his early years, the solace he finds in religion and how he tactfully approaches matters of spirituality with his patients, how he was fundamentally transformed after undergoing the daunting Whipple surgical procedure, the wonder he feels when considering the remarkable progress science has made in cancer therapies, and how he channels his personal experiences to connect with patients.

This is an episode that paints a portrait of grace, resilience, and courage in the face of suffering and loss, and it reminds us to search for the dignity that is inherent in the act of caring for another person.

Mark Lewis, MD, is Director of Gastrointestinal Oncology atIntermountain Healthcare. As a medical oncologist, Dr. Lewis specializes in cancers of the gastrointestinal tract and accessory organs. He has interests in young-onset cancers and hereditary cancer syndromes, shared decision-making, and patient-physician communication. Dr. Lewis is Vice President of American Multiple Endocrine Neoplasia Support, serves on the communications committee for the North American Neuroendocrine Tumor Society, and is an active member of the American Society of Clinical Oncology.
In this episode, you will hear about:
• 2:43 - How watching his father deal with cancer led Dr. Lewis to a career in medicine.
• 7:04 - How Dr. Lewis managed the grief and rage that came with his father’s passing.
• 11:10 - How the speed of medical innovation drives Dr. Lewis’ optimism.
• 19:51 - The role that faith plays in Dr. Lewis’ work and in his relationships with patients.
• 29:07 - Dr. Lewis’ experience as a cancer patient and how it has informed his work as an oncologist.
• 39:21 - The ethical challenges involved in often-toxic treatments in oncology.
• 42:24 - The deeper meaning that Dr. Lewis has found through his experiences at the intersection of science and faith.
• 48:57 - Dr. Lewis’ advice for empathizing and connecting with patients.
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and healthcare executives those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine, we will hear stories that are by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:01] For doctor Mark Lewis, cancer has defined his entire life. Growing up, he witnessed his father's valiant struggle with cancer before it eventually ended his life. While still in medical training, he not only developed pancreatic cancer but also discovered the culprit multiple endocrine neoplasia type one and inherited syndrome that drastically increases one's risk of cancers runs in his family. So now, as a father, he guides his son in making sense of a life burdened with that risk. Despite all this, as an oncologist, Doctor Lewis has also dedicated his professional life to understanding and treating cancers of the gastrointestinal system. In this deeply personal conversation filled with pathos, wisdom and hope, Doctor Lewis shares how he learned to cope with the rage he felt towards cancer in his early years, the solace he finds in religion, and how he tactfully approaches matters of spirituality with his patients, how he was fundamentally transformed after going under the knife for the massively daunting Whipple surgical procedure. The wonder he feels when considering the remarkable progress science has made in cancer therapies, how he grapples with the reality that many cancer treatments have debilitating adverse effects, and how he channels his personal experiences to connect with patients. This is an episode that paints a portrait of grace, resilience and courage in the face of suffering and loss, and it reminds us to search for the dignity that is inevitably, though not always, obviously inherent in the act of caring for another person.
Henry Bair: [00:02:36] Mark, it is such a pleasure to have you on the show. Thanks for joining us.
Dr. Mark Lewis: [00:02:41] Thank you so much for having me.
Henry Bair: [00:02:43] So you maintain a fairly large social media presence, especially on X, formerly known as Twitter. You often comment on your own experiences as a doctor and as an oncologist, but your cancer story started long before you became a doctor and even long before you were diagnosed with cancer. Can you share with us your early experiences growing up with this very real presence and awareness of cancer in your family?
Dr. Mark Lewis: [00:03:08] Certainly. So my family history, which is deeply important to me, is something of a tragedy. So I was drawn to oncology because my father was diagnosed with cancer when I was eight years old and he was 42. And we are not from America, we're Scottish. And so part of the immigration process, as you may know, is to get a chest x ray. And this long predates Covid. This was actually a measure to reduce the contagion of tuberculosis. So we got this very impersonal, extremely dispassionate call from the embassy telling my father that he was allowed to travel to the United States, but that his chest x ray had an abnormality. And that was basically how we found out he had cancer. It was really cold, almost like this Kafkaesque bureaucracy, and gave him his diagnosis. And I know you both think a lot about communication, and this was definitely not how you want bad news broken to a loved one regardless. We arrived in this country and my father set about finding doctors, and one of those doctors was a medical oncologist who treated him for the seven years that he survived with his disease.
Dr. Mark Lewis: [00:04:17] And then when he passed, I was a freshman in high school. I was 14 when he died. My dad was 49, and I was maybe exactly the right or wrong age, depending on how you want to look at it. I had a lot of, um, adolescent angst and I thought, you know, cancer is my enemy now. And it was kind of a very crude sort of conception of, you know, us versus them, me versus cancer. But my point is, is that my dad's oncologist really took me under his wing, and I got to work in his clinic every summer through high school and college. And that was my start in the field. And it's really remarkable to look back and think about what were the lessons from that time that are still relevant now, even while the science of oncology, thankfully has changed and evolved and improved, I often wear sort of a wistful thought exercise. I wish I had a time machine and I could go back and treat my dad. With all of the modern advances, both therapeutic and diagnostic, that we have today. But maybe the biggest insight since he died is the cause of his cancer in the first place. So he went to his grave really having no clue why this happened to him. And interestingly, his father had died mysteriously of cancer in his 60s. After my dad's death, his brother, my paternal uncle, died of a rare cancer a couple of years later. There were all these kind of misfortunes that kept befalling the men in my family, my literal forefathers. And then I had already committed to medicine. I knew I wanted to do oncology.
Dr. Mark Lewis: [00:05:40] My very first day in oncology training. In fellowship, I developed abdominal pain and found out that I had a high calcium level. And to me it sounds like such a minor detail, but to me that was my eureka moment because I knew my dad had struggled with high calcium his entire adulthood, long before his cancer diagnosis. And I knew just enough through my medical training, that there was only a couple of conditions that would cause high calcium and subsequent generations. And only one of them that I knew of that would cause cancer. And that was this hereditary condition called multiple endocrine neoplasia type one. So I was the first person in my family to recognize that we had this, and then everything clicked into place. I've often described it as the feeling when you look at the night sky and you see all the stars and you're able to pick out a constellation, like all of a sudden I could see the pattern that was there syndrome. And doing that right at the start of my cancer training meant that for the rest of my career, both the, you know, the structured training and then actual practice, like I haven't been able to avoid seeing it through the sort of dual lens of patient and physician like you were saying in the introduction. So I choose this. Not really. I chose oncology, I didn't choose to be a patient or to have a hereditary mutation, but I like to think that it's been more beneficial than harmful. It's definitely been difficult at times physically, but for the most part, I view it as a real benefit to my perspective.
Tyler Johnson: [00:07:04] So one thing about being an oncologist is, I mean, being a doctor, but especially being an oncologist is I feel like it becomes an unavoidable part of your worldview that really hard things happen to people all the time, and it becomes almost a truism, whether it's actually true or not, that the hardest things often happen to the nicest people, right? It feels like the person who's just your salt of the earth patient who you couldn't, you know, intuitively love any more than you do, is the one where the chemo doesn't work or the tumors in just the wrong place, or they get the, you know, one most terrible complication or whatever. But all that is just to say that as someone who witnesses a lot of suffering and then becomes this sort of fellow journeyer with patients going through that, one of the things that I have reflected about a lot is that they're suffering. But then there's the moment where a person chooses to either let the suffering become sort of its own form of grace, or to become a thing that really just sort of draws them apart, right? Or pulls them apart. And so, I guess, do you have any wisdom as to, you know, losing your dad when you're a teenager to cancer? That's a big deal, right? That's really, really tough. Do you have any insight into what it was that allowed you almost immediately to turn that to a form of grace, rather than to something that, you know, initiated some path towards your own destruction, which could just as well have happened?
Dr. Mark Lewis: [00:08:37] You're very charitable to to give me the grace, at least as a teenager. I know for a fact I was a very angry young man. And to be very honest with you, and I don't know if we immediately want to veer into faith, but, you know, just like you're saying, Tyler, my dad was, you know, one of the best people I've ever known. And of course, I'm not objective, but, you know, he was a minister and a theologian when he died. People were obituaries, you know, saying that he was saintly. And, you know, that's the level of respect that he commanded both inside our family and without. So you're right, it deeply offended my sort of sensibilities that someone, quote unquote, that good could succumb to cancer that young. And to be honest with you, the answer really came years later. So I kind of went through the, you know, adolescent angst phase. And as I matured and specifically as I reflected on things my dad had written when he was still with us, my perspective changed in much the manner that you are suggesting. My dad had tremendous perspective. So, you know, as he walked through the valley of the shadow of death, one of the things he wrote is that our birth certificate does not come with a guarantee of three score years and ten. And when I keep that in mind, and I remember that in his greatest time of adversity, he had the grace to say, you know what? That's just an average life expectancy. If I'm going to be on the shorter end of that bell curve, then I just need to accept it and make the most of it.
Dr. Mark Lewis: [00:10:00] Then I thought, you know, how do I have any excuse to sort of keep simmering in anger and not turn this into something more productive? So did that kind of corrode my soul for a while? Yeah, and I know there's many people out there who will look at cancer and rail against it and say it's a, you know, sort of a sign that God is not benevolent and, you know, bad things happen to good people. The way I've slowly come to sort of reconcile that is I saw my dad again faced with, you know, incredible odds against him, not lose his faith, not lose his hope. It's just what he hoped for. Change. I know you've heard this before. It's almost a cliche, but, you know, once he knew he couldn't be cured, he hoped for control and time. And when that was clear that that was finite, he hoped for comfort and legacy building. So it took a long time, many, many years for me to reach the place I am now. And I still see patients struggle with that, understandably. But the answer is by kind of learning from my dad's example, and I'm almost the age now that that he was when when he died. You know, I think that there's a little bit of maturity that came along with that, but also emulation of someone that handled this experience as gracefully, to use your word as anyone I've ever known.
Henry Bair: [00:11:10] You mentioned that it took you a while before you embraced the perspective that you now hold along the way. Your father passed away while you were still in high school. This was long before medical training even commenced, right? So as you're moving through medical training, even as a medical student, you probably saw a lot of patients who were very sick and for whom you could do little, at least in the way of extending their life. Yeah. Again, like, I want to come back to the fact that you it took you a while to come to this perspective of understanding of sort of how to maintain grace under pressure and suffering. But how did you develop that perspective through medical training?
Dr. Mark Lewis: [00:11:48] Yeah. I mean, one of the things that we've already hinted at is that we are living through a time of incredible progress. Like, you can tangibly see things get better now. Do they get better fast enough to help everybody? No. But again, I think, you know, to the extent that that time heals all wounds, one of the things it does is it does provide perspective. And looking back, as bitter as I was that my dad died when he did, I can also see that there were these kind of, if you'll forgive the expression, providential miracles that actually extended his life. The best, most concrete example I can give you is he died in 1994, but he could very easily have died three years earlier, in 1991. And, you know, oncologists, you know, still today we give chemotherapy that can be extremely detrimental to the immune system. And indeed, that's exactly what was happening to my dad in the very early 90s. His white blood cell count went to literally zero. So he was in the ICU with an overwhelming infection that he just couldn't fend off. And that week, the Food and Drug Administration, the FDA, approved what we now use, you know, so routinely. But but then it was literally a hot off the press novel drug. And that drug was neupogen or, you know, g-csf a medicine that can stimulate white blood cell production in the bone marrow. And looking back on it now, I can see that that drug came along at just the right time not to save my dad's life, but to extend it.
Dr. Mark Lewis: [00:13:13] And so even when I learned sort of how incredible that timing was and, you know, as a child, when my dad's oncologist, you know, caused his white blood cells to kind of flood out of the bone marrow and rescue him from sepsis, it honestly looked like a magic trick. And I think it was, you know, Arthur C Clarke that said, any sufficiently advanced technology is indistinguishable from magic. And so I sort of realized that, you know, yes, medicine is secular, but these incredible and wonderful things are happening. We just have to again, maintain hope that things are getting better incrementally. We have to admit that in a sort of trial and error paradigm that is experimental medicine, we are going to have really biologically plausible concepts that don't result in tangible improvements. But the biggest failure would be to not try at all, both in clinical practice and in clinical study. So again, did I realize that back in the 90s? No, that I realized that as a medical student, sort of. And have I actually witnessed that firsthand as both a patient as and as an oncologist? Yes. So I think to the skeptic, I think the more you witness. The ability of modern medicine to improve lives in a way that it couldn't even a few years ago. That probably is the biggest driver, the biggest sort of rational driver of my hope beyond pure faith.
Tyler Johnson: [00:14:39] Yeah. You know, it's interesting. So, you know, I don't too often tell specific patient stories. And when I do, I change demographic information to make them unidentifiable. So I'll do that here. But I have a patient that I have taken care of who had stomach cancer and underwent a surgery. Then the surgery became very, very difficult. They became very, very sick. They ended up in the ICU and then were in the ICU for like six weeks, and during this time went into kidney failure. We're on dialysis. It wasn't even clear they would get out of the hospital, but eventually they did, and their kidneys improved enough that they were able to come off of dialysis. But, you know, took too long and were too sick to have any further therapy after that. And so we just hoped that the cancer was gone. And then a couple years down the road, when, you know what, the cancer came back. So the cancer comes back. And then we were still in a bind, though, because the kidneys, although better, were still not great. And so we tried a little bit of this chemo that worked for a little while, but not for very long. And then we tried a little bit of that chemo, which never really worked. And then we tried some radiation, which worked for a little while, but then the cancer quickly came back and now we were really left with this was about 4 or 5 years ago with not much to do, but there was just data starting to come out that in stomach cancer you could look at these certain markers, which just in case there are budding oncologists out there, what's called the PDL one CPS and microsatellite instability.
Tyler Johnson: [00:16:06] And this person is the very rare person who had basically a high score is quote unquote good on both of those. And this person had a high score on both. And there was just starting to be enough data that we felt like it was reasonable to try immunotherapy. And the short version of a very of a much longer story is that this person that had a cancer, that if the person had been diagnosed a year or two earlier with exactly the same situation and exactly the same timeline, I would have been in a place where I would have said, I'm sorry, we have nothing else to offer. Got started on immunotherapy and had a response, and then had a better response. And then within a year, all traces of the cancer were gone. And now this person has been coming and seeing us ever since, and has had no evidence of cancer in their body for three years. It's been so long that we finally just stopped the medicine, and now they've had like a year's worth of scans after stopping the medicine. And there's no evidence of cancer. And as an oncologist. I don't even know what to say about that. And no side effects at all. It's like if you ran into this person in the waiting room, you could not possibly pick them out of a lineup. As a person that has cancer, and as best we can tell, there's no evidence of it anymore. I don't even know what to say about that.
Dr. Mark Lewis: [00:17:23] Well, I'll say that people have asked me, you know, Mark, you know, have you witnessed miracles in your career? And I know that that's a very loaded word that immediately invites all sorts of skepticism and rightly so. What I will say, and you'll appreciate this phrasing, Tyler, is I will say I've seen exceptional responses in the scientifically acceptable jargon, just like you're saying. I had a very similar experience. Again, I won't betray any sort of private patient information. But just like you're saying, I had a patient two years ago with metastatic colon cancer, new diagnosis, literally the day before I was going to start them on chemo that I knew would extend their life, but not not cure them. I found exactly the same markers you're talking about, and I have never given them a drop of chemotherapy. I've only treated them with immunotherapy and their disease is all gone. Complete remission with, like you're saying, no toxicity. Now, does that always happen? You and I both know that that is the exception, not the rule. But once you see it and you really do, I think almost have to witness these things firsthand. You become a believer that oncology is certainly more than chemo, and that progress is happening right in front of our eyes. It's actually remarkable, even for me to sit here and think about the format we're in right now. My dad died without even sending an email, let alone having a zoom podcast recording, you know? And the pace of progress is really, really exciting.
Dr. Mark Lewis: [00:18:43] It is actually one of the things that makes oncology to me attractive as a field. But I think we also have to have the humility to realize that, you know, history is going to judge us harshly for having given patients chemotherapy like in a century from now, maybe sooner. I don't know. I think we'll look back and just think this was such a crude way of treating cancer that we were such blunt instruments. But, you know, we did the best that we could at the time. And again, having seen with a little bit of hindsight, evidence that my father himself benefited from therapeutic advances, it makes me less cynical and a lot more carefully optimistic. That's a phrase I use a lot with my patients. I try not to overpromise and under-deliver. You know, a lot of statistics and numbers find their way into discussions of risk and benefit. A lot of times you just have to try something and see if it works and make a reasonable judgment about efficacy versus tolerability, hopefully finding both. But yeah, it's it's an interesting area to practice in with the knowledge that we have so far to go. And yet we have to acknowledge sometimes that we've come a ways too. I think we need to do that to sort of be appropriately sanguine.
Henry Bair: [00:19:51] All right. So you've already mentioned several times the role that religious faith has played in your life and how you've dealt with tragedy. Faith is not something we shy away from on the show. In fact, we dive headlong into it. Well, as much as the guest is comfortable with it, I get the sense that you are quite comfortable with it, so let's get into that. How has your understanding and relationship with religion evolved over time, as you first witnessed cancer in your family, then developed cancer yourself and now treat cancer patients?
Dr. Mark Lewis: [00:20:23] Yeah, no thank you. And I heard one of your other listeners refer to this podcast as a safe space for talking about this. And that was such interesting phrasing because the implication there, right, is that, you know, medicine at large is not friendly towards these conversations. And and I get it. I think on some level, medicine is deliberately secular because we treat people of all faith traditions. You know, physicians are from all backgrounds, actually, some of the best, most compassionate doctors I know are atheists. So I don't think you have to have religious faith to be a good, compassionate doctor. Far from it. But you're right that I bring it up several times, quite purposely in this conversation. Again, because I've heard your podcast before, and because it really has become an important part of my ability to sustain myself professionally, and also a potential way into understanding my patients identities on a deeper level. I've often said, and I think you would both agree with me, I really hate to see the social history become just a reductive checklist of vices, you know? Does the patient smoke? Do they drink? Do they use illicit drugs? Because if you look at it that way, you know, you're already starting, I think to depersonalize the patient and also the social history may be something you only take at the initial visit and never again.
Dr. Mark Lewis: [00:21:37] So one of the things I love to hear, Tyler, was how you've expanded the synopsis, the one liner that patients get at Stanford to include, you know, some of these grace notes of who they are. Like, I think I heard you say, you know, what's their favorite food or their favorite band? Or do they have pets? Uh, to me, um, I allow the patients to tell me if they have a religious faith or not. It's it's never something ever that I've projected onto them without asking first. I think that's inappropriate. You know, if a patient asks me to pray with them, I think I've almost always honored that request. But again, I would never do it the other way around. And I think the the part of this conversation that I almost never get to voice in a professional setting is just how helpful it's been to me. Like people outside the field will say, how can you do this, Mark? It's just so depressing. And, you know, Tyler and I knew what we were signing up for when we entered cancer medicine. Like, we knew that we were going into a field where we're going to get very, very close to people and then watch them die. I think where my faith has matured, from that angry teenager to the slightly more adjusted man talking to you now is realizing again, like immortality is not the goal.
Dr. Mark Lewis: [00:22:44] Like none of us are going to get there. The question is, how do we make the best out of the circumstances we're presented with? And don't get me wrong, like we'll talk later about my own experience as a patient, but I've never received a drop of chemotherapy. I haven't required radiation. Those things may be in my future, but I have not yet had that taste of my own medicine. So some people will listen to this and think, well, he's sitting in a very privileged position as a patient, and I am, and I readily acknowledge that. On the other hand, I've seen such incredible good come from such challenging circumstances. I've seen families reunited after years of estrangement. I've seen people do absolutely incredible things with the intentionality that comes with knowing that their time is finite. And, you know, every time I meet a patient in clinic, I'll be honest. There's this sort of question I have in the back of my head is, how long do I have to get to know this particular person? And one of the things I've witnessed so encouragingly throughout my career is that that that time span seems to be getting longer.
Dr. Mark Lewis: [00:23:47] I don't know what you were told in medical training or you, Henry, but I was told that oncology may be short of psychiatry will bring you as close to the patient as any other specialty in terms of who they are as a person, and I think that's true. But I think a longitudinal relationship has a variety of advantages. One, the patients living longer. Two, you are getting to have that deeper relationship. And again, having now witnessed firsthand the deaths of hundreds, if not thousands of people to cancer. Yes, of course I grieve when I lose a patient. And if I don't do that, I think I need to hang up the white coat and do something else. On the other hand, I've learned a bit more to appreciate the fact that if I meet someone and I get to be involved in their life for weeks, months or years, that that was a privilege, no matter how long that lasted. I know that sounds like a very kind of sunny view, but it's true. And so you're right. My faith has sustained me where I sometimes wonder if if I didn't have this faith, would I be able to continue practicing as an oncologist? For me, it's definitely how I feel and refill my cup.
Tyler Johnson: [00:24:50] And I will say this just to build on what you were saying is one approach to oncology, which I respect and admire and am grateful for, which has a lot to do with cell surface signaling and cytokines and molecules and, you know, tyrosine kinase inhibitors and deep research in a wet lab somewhere that I, you know, don't know anything about how to do all of that stuff. So I, you know, confess my ignorance there. On the other end of oncology is taking care of the patients. Not that those are mutually exclusive. They're just it's a very different thing, right? We're working with cells or mice or whatever in a lab than than actually giving the medicine to patients. And at least on the human end of that spectrum, what I have become convinced of over years, because, you know, it's funny to your point, though, faith is very personally important to me throughout my training. And for the first number of years as an attending, like the first time I teach classes in medicine at Stanford, the first time I, I spoke publicly about faith in that way in a class at Stanford. Henry knows this because I've told him this in discussions at the time. I honestly was like, afraid I might get reported to the dean's office or something because.
Dr. Mark Lewis: [00:26:02] Right,
Tyler Johnson: [00:26:02] Right, because it's just like you just don't I don't know, you just don't do it. But with all of that as backdrop, the thing that I will say is this what I have become convinced of is that putting the answers to religious questions aside for a minute, like the specific thing that you think about what your formulation of the human soul is or what you think happens after a person dies, or where you think we came from or whatever. Putting the specific answers aside, what to me feels like a virtually unavoidable connection between clinical oncology and faith writ large, or questions of the soul writ large, is the questions like, I just don't know how to take care of people who are facing suffering and death and dying without asking the questions that are the things that animate the religious impulse in the first place, which are things like what is a person and where did we come from and why are we here, and where are we going, and what does it mean to be alive and and all of the rest of it. Right. And so I feel intuitively led to engage with those questions in clinical oncology in a way that is eerily reminiscent to me of the way that I engage in them when I am pondering matters of faith.
Dr. Mark Lewis: [00:27:21] Yeah, that is so well said. I mean, we are dealing with the big topics, right? Life and death. And as you said earlier, the sort of righteous indignation that we feel that, you know, bad things are happening to good people, I do think that there's probably some selection bias there. Tyler, like, I often wonder if we're just sort of almost reinforcing preconceived notions of virtue, right? Like that, you know, good moral choices will be rewarded with good health. That, to me is almost the corporeal version of the prosperity gospel that that's not, you know, at least in the Judeo-Christian tradition. That's not what it says in the Bible. And again, my dad, who's no longer with us, but he wrote a book while he was dying, while he was going through chemo and actually reread it every lent. So it's very timely that I would be reading it right now while I'm talking to you guys. We're recording this during lent. And again, just the the level of selflessness he had there. As best I can tell, not an ounce of self-pity in the whole 400 plus pages. There's a lot of contemplation, however, about, you know, God's benevolence not being judged by how long we live. And I guess I've tried to see it that way. It's not easy always, but I've tried to see that way more and more as an oncologist and just be really grateful for the time I do get to have my patients. And the fact that these, again, borderline miraculous interventions come along again, not at a linear pace. It's very much a punctuated equilibrium. But they do happen. And when they happen and you're able to extend someone's life and inflict less toxicity on them, it really makes you feel like we are making progress as a field. And again, it it gives you a little bit more fuel to keep coming back to work and doing things that are hard but necessary.
Tyler Johnson: [00:29:07] So I want to switch gears now for a minute. So you've alluded briefly to the fact that not only was your father diagnosed with and then died from cancer, but then you also had this experience of having a high calcium and then being diagnosed with cancer yourself. So first of all, just to give us a roadmap to the degree that it's possible, can you talk us through what kind of cancer was it and and what has your own treatment journey been like?
Dr. Mark Lewis: [00:29:29] Yeah, thank you for asking. And I have absolutely no problem sharing this. In fact, I view it as a privilege that I get to waive my confidentiality in a way that I know a lot of patients are not able to. So the type of cancer I was eventually diagnosed with was a pancreatic neuroendocrine tumor or tumors, most famously, are tragically, these are the tumors that killed Steve Jobs and Aretha Franklin. And so for a while, they were sort of seen as the much more benign brother or cousin to traditional pancreas cancer, pancreatic adenocarcinoma. But they are potentially deadly and they can certainly affect your quality of life. So in my case, I, for want of a better phrase, I'm a mutant. So in explaining this to my son, who has inherited the condition from me, I actually often will use the X-Men as a reference point, which again, is probably glamorizing it a tiny bit too much. But. So I'm a mutant, so every cell in my body carries at least one of these mutations. And that means that my pancreas is actually riddled with these tumors. So sort of having my entire pancreas removed, I'm always going to have these tumors inside me, some quiescent and some not. So in 2017, several years into being aware that I had this condition and sort of following myself with annual testing, one of the tumors in the head of my pancreas started to grow very aggressively and was clearly sort of differentiating itself, not in a good way from the remainder of my pancreas. And so it needed to be cut out. So I went and had a surgery called the Whipple procedure, which many people in medicine will know for people that are not in medicine, I often say it does to your abdomen what Picasso did to faces.
Dr. Mark Lewis: [00:31:00] It takes the recognizable elements and rearranges them in an almost cubist fashion. And I can tell you when you wake up from that procedure, you feel it. You feel like, hey, things are not in the right place. I've been, I've been rearranged. But to go through that experience was really meaningful to me because I treat exclusively cancers of the gut. I'm a GI oncologist, and a very high number of my patients have traditional pancreatic cancer. And many of them. Most of them will never see the operating room because traditional pancreas cancer is so difficult to remove. It almost is often think of it as having like tentacles, that it wraps its way around these blood vessels and makes it very, very difficult to extricate. So my point in telling you this is, while I know for a fact it was brutal, it's physically the most difficult thing I've ever done to go through the Whipple surgery. I also know how lucky I am and was to even be a candidate for that operation. I have countless patients with traditional pancreas cancer, adenocarcinoma, who would absolutely do anything to trade places with me and be operable themselves. And so from that perspective, which again took time for me to have that outlook, I had to heal, I've again come to a point of profound gratitude. And so far as I mentioned earlier, the only thing I've needed was surgery. I've not yet needed chemo or radiation or immunotherapy or any of these other things that we have in our medical oncology toolbox.
Dr. Mark Lewis: [00:32:28] So I'm a little bit of a hypocrite if I tell my patients that I know what they're feeling. On the other hand, what's really interesting is I quite deliberately advertise my Whipple procedure, and I'm happy to explain how I did that. So basically, I put it out in the world that not only was I a patient and an oncologist, but I was a physician who had been through this particular procedure and in sort of the incredible online ecosystem that we have these days, patients will now seek me out, not because I'm the smartest doctor, I have the most clinical trials. I am neither of those things. But because they're looking for someone who, quote, gets it, they're looking for empathy. And I find it absolutely incredible that people diagnosed with a serious illness would prioritize that over intellect or breadth of research experience, or any other potentially more objective metric of oncologic acumen. It's the the resonance and the mutual understanding that they seek. And the more I put that out, the more I get back. It's this kind of beautiful feedback loop I've gotten into ever since the surgery. So that was six going on seven years ago. Now. I still feel that every day I'm not the same person I was before I went to the operating room, but again, with the benefit of a lot of distance and some hindsight, I can tell you that it's made me a better doctor in the sense that I can relate to my patients better.
Henry Bair: [00:33:49] So I'm wondering, like through all of your experiences as a patient, were there some things you realize about doctoring that you wished you had known before you had become a patient?
Dr. Mark Lewis: [00:34:02] Yes, I can tell you that the first thing that comes to mind is just how, um, illusory statistics can be in guiding our decisions. So heading into the surgery, my surgeon, who's absolutely wonderful, you know, sort of full informed consent, told me very specific numbers or the percentage risk of all these different things happening. For instance, there was a 30% chance I was going to have diabetes because I lacked all of my pancreas. One of the things he didn't underestimate, he gave me the correct number. But one of the things he mentioned, for instance, was, oh, there's a chance that your stomach will stop working in this condition called delayed gastric emptying. And that was a complete abstraction to me and seemingly unlikely until it actually happened. And the reason I'm bringing it up in the context of this conversation is so much of oncology is this very queasy salesmanship. Like, if you think about it, no one ever wants chemo. No one in their right mind wants chemo. The job of the oncologist is to determine who needs it. And then again, completely respecting autonomy, convincing people that this is worth undertaking.
Dr. Mark Lewis: [00:35:08] And again, just like my surgeon did with me, I do the same thing. I will quote to a person, say there's a 30% chance you're going to get mouth sores, or a 20% chance you're going to get some torrential diarrhea. I know these are lovely things to talk about, but I am a oncologist. But what I often tell people is the first cycle of treatment is going to be instructive to everybody. It's going to be instructive to the patient. It's going to be instructive to me. So the numbers are necessary. They give us a cognitive framework by which we can assess risk, but there is nothing like experience. It's sort of the gulf between theory and practice. So I think what I learned the hard way is that, again, these odds really are not that helpful until you go through with it. The way one of my patients put it was, doc, you can tell it, you know, any number you want. For me, it's going to be 100% that it happens to me, or 0% that it doesn't. And I thought, gosh, that's such a reductive binary and yet completely accurate way of looking at it. Yeah.
Henry Bair: [00:36:08] So okay, so that's a very concrete, specific way of thinking about a very concrete, specific aspect of cancer. Were there things about the general ways that you communicate with patients that has changed as a result of your time as a patient?
Dr. Mark Lewis: [00:36:25] I have tried not to ever dismiss toxicity again. My surgeon took complete ownership of the fact that my stomach stopped working, and I had a nasogastric tube down my nose and throat for over five weeks. It was completely miserable. So one thing that I have utmost admiration for him is he never shirked responsibility. He checked in on me throughout that time and, you know, was very much an active participant in my recovery from that. So again, when when surgeons or oncologists incur complications, I think a sense of responsibility and ownership rather than abdicating it is very commendable. But the other part is, and I think Tyler in particular will understand where I'm going with this. You know, oftentimes when a new drug looks really promising, it's very seductive to emphasize its benefits and minimize its side effects. And the phrase that I have learned since my surgery, in particular to to loathe the most is manageable toxicity. And I know why Tyler is laughing, because that phrase comes up a lot in our field, and every time I hear it, I'm always waiting for sort of the rhetorical sleight of hand by which someone is going to proceed to minimize whatever horrible side effect or side effects are occurring. The biggest mistake I actually made in fellowship was not, thankfully, you know, overdosing somebody on chemotherapy or, you know, slip of the prescription pen. It was minimizing someone's suffering. So I trained at the Mayo Clinic, which is a big myeloma center, and a lot of myeloma drugs then and now can cause neuropathy.
Dr. Mark Lewis: [00:38:07] And neuropathy, I think is particularly challenging because at least until it's very sort of latter stages, it's something that the patient might feel, but it's really hard sometimes for the clinician to perceive. So my point is that I was presenting a case to one of my faculty, one of my attendings, and I said very blithely, I said, oh, this patient's doing great. They only have grade two neuropathy. And this doctor, who is a sort of a giant in the myeloma field, looked right at me and said, I never want you to say, only followed by toxicity. Again. He said, you would not want to have grade two neuropathy. He actually had me go and look up the definition. And he's absolutely right. I would not want to have grade two neuropathy. So he's like, never ever say they are only having XYZ again. So I've always kept that in mind because to me, you know, this is the courage of the noncombatant. When I prescribe chemotherapy, I'm not the one getting it. I'm not getting that taste of my medicine. So it's really important, I think, to be honest about that. And this again goes back to the risk benefit conversation. You have to convince someone to put a noxious substance in their body because you honestly believe you ethically believe that it's more likely to benefit them than to hurt them in the long run.
Tyler Johnson: [00:39:21] Well, and the real paradox there that I just don't even let myself think about very much, because if I do, then I just like, can't go to sleep at night. But is that for oncologists out there is the paradox of what we call adjuvant treatment, right? Which is this idea that if we do a clinical trial and we take 200 people who have all had surgery for cancer X, and we take 100 of them, and they get the surgery and nothing else, and then we take the other 100 of them and we give them surgery and then chemotherapy. If in the group that just had surgery, 50 of the people are cured of their cancer. But in the other group, 60 of the people are cured of their cancer. Then there is a plenary presentation at Asco. There is great, you know, excitement and enthusiasm. The company that makes whatever the drug is probably makes now millions if not billions of dollars because the drug gets prescribed as a matter of course. And yet what that means is that for 40 of those people, they got the chemotherapy drug. Well, no, actually 90 of those people got the chemotherapy drug and got no benefit of it from it because 50 of them would have been cured anyway, and 40 of them. The cancer comes back in spite of the drug. So you are giving 90 people whatever the toxicity is, in order to buy long term survival for the ten.
Dr. Mark Lewis: [00:40:49] So, Tyler, I'm so glad you brought that up because the whole notion of adjuvant therapy, when I first heard about it as a fellow, I thought, how on earth can I reconcile this with my ethics? And perhaps more sort of practically, how can I convince a patient to do this? Because, as you know, oftentimes patients in that scenario will come to us and the surgeon will have used a phrase like, we got it all. In which case, why on earth do you need or would let an oncologist come along and give you chemotherapy after the surgeon allegedly removed all the cells? And the answer, of course, is that these things can lurk microscopically. The way I finally resolved that was to kind of go back to the trolley problem, where again, your audience is probably very well familiar with it. But just to kind of put it into context here, you know, in the trolley problem, you're standing by the track with the lever, and if you don't pull the lever, these people are going to be flattened by this, you know, out of control, barreling down the track trolley. If you pull the lever, you divert it and it hurts fewer people. So that's the way I've looked at adjuvant chemotherapy, is that I know if I stand by and do nothing, that more people are going to be harmed by the cancer than if I intervene. But you're right, it is extremely hard on a person by person basis to justify giving chemotherapy when it's of unclear benefit. Adjuvant chemotherapy is and should be the hardest sell in medicine, in my opinion, but that's the only way I've been able to sleep at night. To use your to use your phrase is to find some solace in the science, even if on a person by person basis, it's very, very difficult to justify your decision.
Tyler Johnson: [00:42:24] So this conversation is unusual because you have so many different pulpits from which to talk, like you have the pulpit of having been a patient, you have the pulpit of having been the son of a father who died, and then you have the pulpit of being a medical oncologist. Right. So you can look at your father's cancer through the oncologists lens and think about, you know, what you would have done if he were your patient now. And you can look at your own diagnosis and think about and, you know, probably project what might happen down the road and what therapies you may need and how advances in the field are going to help you and all the rest. And then when you see a patient, you can see it through the prism of having had a Whipple surgery yourself. And then actually a forth pulpit is also being a, you know, a person of faith who is able to who again, even had a father who is a person of faith and is able to think about and articulate those questions. So now this is going to sound like a ridiculous question, but if you try to weave all of those threads to mix my metaphors, if you try to weave all of those threads together, and I were to say, you know, as a patient son of a patient doctor and person of faith with this sort of front row seat to so much of the deepest, most intimate parts of the human experience. What does it all mean? Like what does it all? What does it all add up to? No, but I see I told you you're going to laugh. And you did. Yes, but but honestly, like, if you were writing the book. So, you know, someday you should write a book. Your dad wrote a book. You can write a book. So if you're going to write a book called What It All Means, what would you say?
Dr. Mark Lewis: [00:44:08] Yes. Well, it's funny, I actually am writing a book inspired by my dad. So real quick aside, I just again want to appropriately distance the time of his cancer and his writing and then his death from what I'm going through right now. So I heard him, Tyler, write his book on a typewriter through the wall from my childhood bedroom. So this guy, he would, you know, teach seminary classes, he would go through chemo and he would come home. And again, being well aware that his time was limited, he would meticulously type out his manuscript while I was, you know, falling asleep next door so that, you know, as you might imagine, really plants a seed in me that I have very few excuses here to, um, just be I don't know what the right phrase is intellectually lazy or less than productive like. And I also think it's important to note that he knew that he needed to create a record, a legacy in text. And of course, I'm one of the many people that's benefited from that. So that's one thing I'll say. The bigger question here, and this is really going to get into how I reconcile science and faith is. The only way that cancer makes sense to me is viewing it as the price we pay for evolution. If cells had perfect reproductive fidelity and mistakes were never made, you can argue that cancer wouldn't happen. But then we also wouldn't evolve. And, you know, obviously it's that's a horrible thing to say to someone that is bearing the brunt for the price of that progress. But then again, the other thing that's evolving is our fields.
Dr. Mark Lewis: [00:45:37] And I know I've said it several times, probably ad nauseum during this conversation, but if you set your perspective broadly enough, and again, almost always with some distance away from the acute pain, you can witness things getting better. Do they get better for everybody at the same time? No. In the same way, in your example, not every patient benefits from adjuvant chemo to the same degree. But I guess the final thing I'll say, and this is this is not macro at all. This is very micro is one of the ways I've learned to forgive myself for all the ignorance that I still have in my practice is to realize that there is not one bit of malice that I hold against my father's oncologist, not one like I don't blame him for the limited tools he had when he was treating my dad in the late 80s early 90s. I don't blame him for not having discerned the pattern of hereditary disease that affects my family, because I know he was doing the best he could in the moment. And I think as oncologists who are likely prone to self-criticism, we do need to give ourselves, use your own phrase back at you, a little bit of grace, and realize that we really are in the infancy of doing this. Maybe our fields in its adolescence. I suspect it's still in its infancy. You and I have practiced during a time where a paradigm shift has occurred. We have immunotherapy. Now is arguably the fourth pillar of treatment alongside surgery, radiation and chemotherapy.
Dr. Mark Lewis: [00:47:04] I'm so excited to see where this is going to go. And then you were very kind to give me all these pulpits. There is a fifth pulpit, and that's being the father of a child who has the same condition that I do. And it's interesting because when I really look in both directions, I can see my forefathers who had no idea what was going on with their bodies on a genetic basis and had no foresight of what was going to happen. And then there's my son, who literally since he's been old enough to understand English, has known that he is different. And again, not in a way that I've tried to stigmatize him, but we have this whole X-Men analogy. We have a special handshake that we do. We call it the Lewis Men Club. And I'm really legitimately hopeful that his treatment will be less invasive, less blunt than anything that I've gone through or his ancestors have gone through. And, you know, that's that's my other fuel, right? Is this is a absolutely a family affair for me. And yeah, I wear a lot of hats. But every night I go home and I look at that kid and he's in robust health. You couldn't tell there's a thing wrong with him. And I hope that you can stay that way for as long as possible. So massive, fairly wide ranging answer to your big question. But yeah, I have a lot of belief that things are are getting better. I just think again, on the individual level, it's hard sometimes to to see that.
Henry Bair: [00:48:24] I want to close with a question. We often conclude with, you've eloquently answered this big philosophical question that Tyler has posited, but I now want to bring it down to a practical level. Not that you haven't already done so at times during this conversation, but nonetheless, I want to ask you explicitly. You said that many patients have found you and chosen you as their doctor precisely because you get it. You've gone through what they're going through. But for most physicians, that's never going to be the case. And here's what I mean. I'm an ophthalmologist, but I have never personally experienced a detached retina, nor do I ever want to have a detached retina. Right. I don't ever want to develop uveitis or glaucoma or go blind for any reason. Right? So for most of us whom, thank God, have not experienced the conditions our patients are going through, what advice do you have for better empathizing and connecting with them?
Dr. Mark Lewis: [00:49:21] Yes. So I'll say two things to that. One is my wife is a pediatrician, and of course we've all had the experience of being children. But my real point in telling you this is in her residency, and I thought this was so brilliant, an exercise. They made all the residents taste the antibiotics that they were going to prescribe to children. So they they actually got the sensory experience of the very treatment that we're prescribing. And what you're getting at, which I completely agree with, is very few of us want to go through the conditions our patients experience. And in my field, it would be unethical to force oncologists without cancer to receive the chemotherapy drugs that we give every day. So what I think it comes down to is recognizing what the patient knows that you don't what you can't know. And my my analogy that we might end with is, to me, it's the difference between a pilot and a bird. The pilot goes through years of training to understand the fundamental forces of flight. You know, things like thrust and lift and drag. The bird just knows how to fly. And to me, there's a beautiful ability among humans to exchange information in a manner that helps both parties. Obviously, pilots aren't talking to birds about, you know, how can I have a better flight path? But my point is, is that, you know, we are in medicine, almost always the pilots. But our patients have this embodied knowledge that if we don't listen to them, we are really, really ignorant.
Dr. Mark Lewis: [00:50:45] And again, this this can run the gamut from the actual experience of the disease. It can get to the side effects that I mentioned earlier that we really have to pay very close attention to. And in oncology, it has taken a frankly embarrassing length of time for us to move away from a really hard black and white metrics of how long is this person living to actually asking meaningful, prospective questions about their quality of life? So no matter what kind of clinician you are and like you say, as an ophthalmologist, I hope you have immaculate vision for as long as possible. And just because you don't share a condition with your patient doesn't make you a lesser doctor. I firmly believe that. On the other hand, I think recognizing the patient knows things and feels things that you don't. I think that is the key. That's the nexus to me for meaningful exchange. And again, as a as a doctor that prescribes drugs every day that can cause neuropathy, the most tangible example I can give you is virtually no clinic visit goes by without me asking my patients, hey, what are you feeling? And I don't just mean that as an emotional temperature taking, I mean that as a physical. Do you have sensation in your fingers and toes? So again, a tangible, discrete example, but something that's been very, very helpful for me to acknowledge in practice.
Henry Bair: [00:51:55] Well, with that we want to thank you so much, Mark, for joining us, for being so open and sharing your story, and for all the beautiful insights you've learned along the way. You know, as Tyler mentioned, you're able to draw on this multifaceted perspective as a caregiver, as a father, as a son, as a physician, and as a patient. And I believe for anyone who falls within one of those buckets, which is to say almost all of us, this will be a profoundly valuable conversation.
Dr. Mark Lewis: [00:52:26] Thank you so much for sharing your platform with me. I've really admired the thoughtful exploration between humanism and medicine, which should not be mutually exclusive, that you both present here. And again, just an absolute privilege to be a partner in conversation with you.
Henry Bair: [00:52:45] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the Doctor's Art.com. If you enjoyed the episode, please subscribe, rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.
Tyler Johnson: [00:53:04] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient, or anyone working in health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:53:18] I'm Henry Bair
Tyler Johnson: [00:53:19] and I'm Tyler Johnson. We hope you can join us next time. Until then, be well.