When the Doctor Becomes the Patient: A Conversation with Dr. Mark Lewis

Dr. Diane Reidy-Lagunes:

Today's guest is a doc with close to 75,000 followers on Twitter and his pinned tweet reads, "A patient who never smoked, never drank and was fastidious about his diet died at the age of 49. That patient was my father. He went to his grave not knowing he carried a genetic mutation that caused his fatal tumor. Virtue doesn't guarantee health." Mark Lewis is a cancer doc. He is also a cancer patient. He bears a strong resemblance to his dad, and he has the very same cancer that caused his dad's passing. We're going to hear his story today.

Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcasts.

Mark Lewis is a cancer doc. Inspired by his dad, he found medicine to be the perfect marriage of two disciplines he loved: science and compassion. He wanted to care for others with challenging diagnoses like his dad. Then day one of his fellowship, he developed abdominal pain and boom: He too is diagnosed with the very same cancer. Dr. Lewis is here today to share his story. Mark, welcome to the show.

Dr. Mark Lewis:

Oh Diane, thank you so much for having me. I'm delighted to be with you and your audience.

Dr. Diane Reidy-Lagunes:

It's really an honor to have you here. If it's okay, I'd like to first start to say, how are you?

Dr. Mark Lewis:

Oh, you're so kind to ask. I am stable in every sense of the word. So as some of your patients will relate, you know, I kind of live my life a little bit scan to scan. But if things aren't changing in a sinister fashion, then I feel very comfortable. And then I can return my focus to my patients, which is where I like to be professionally.

Dr. Diane Reidy-Lagunes:

We love the word stable.

Dr. Mark Lewis:

We do. It's underrated. I know we like shrinking and responding, but stability is so underrated.

Dr. Diane Reidy-Lagunes:

That's exactly right. And we say, “If it can't grow, it can't hurt you (with rare exception).” Mark, you were eight years old when your dad was diagnosed with this cancer. Can you share a little bit of that story?

Dr. Mark Lewis:

My family's story really dates back to when we were moving to the United States. We came from Scotland and part of that process was immigrants have to get a chest x-ray. And the idea is to screen the incoming Americans for tuberculosis. And we sort of got this good news, bad news call from a very impassive government official who said, “You know, the good news is that you don't have TB. The bad news is something is really wrong with the right side of your chest.” So he found out, in this sort of really circuitous fashion that he had cancer. So we got to America and quickly had to engage a healthcare system that, in every sense, was foreign to us. We immediately had to find a surgeon and spend tens of thousands of dollars having an operation we weren't planning on. And, you know, my dad's cancer was not completely removed by that surgery. He required radiation and he required chemo. So this was the late eighties. Back then it was pretty toxic.

And it really shaped my understanding of the relationship between the oncologist and their patient, and sort of the need sometimes to bring them back from the very brink. My dad had, at one point, absolutely no white blood cells, and he was in the intensive care unit really on the very edge of death for infection, and his oncologist walked in and that was the week that the Food and Drug Administration approved Neupogen, a growth factor you and I use now routinely, or medicine like it, to raise someone's white blood cells. And so I was a boy at the time, and this was the closest thing I had seen to either a magic trick in the secular sense or a miracle in the religious sense. Just the timing was so providential. And it made a huge impact on me because I thought, “Huh, these medicines have been super, super hard on my dad.” You know, I saw him lose his hair. I saw him vomit at almost every meal, but I also saw this oncologist rescue him. And that gave us three more years. It didn't give us forever, but those were really formative years for us, certainly for me and my family and my mom. And you know, I'm always grateful for that time. And I think about that all the time now, as I see progress just racing forward in our field – not fast enough for everybody – but every time we approve something new, the best thing it's doing is extending people's lives and giving them better quality.

Dr. Diane Reidy-Lagunes:

That's right. And now you are in medicine and suddenly you are the patient. Could you share with us how that happened and what that must have been like for you?

Dr. Mark Lewis:

Yeah. So, my first day of specialty training, I developed this abdominal pain and I realized through a long series of logical leaps that I must have the same disease that my dad did. I had this Eureka moment that, “Oh my gosh, this is a genetic condition that we carry.” And it actually allowed me to then go through my training in sort of two tracks. One was being treated as a patient and sort of weighing risk and benefit as I decided what to do. And also learn, you know, the art and science of oncology. It's always a little bit disingenuous to say all of this feels like a gift, but I will say it was really instructive to be trained in that manner because, as you and I are aware, sometimes we talk about treatment and we focus only on the good stuff. The fact that it does make tumors shrink on a scan. And some of our colleagues will use this phrase “manageable toxicity,” meaning that we think that the side effects are worth it. But when you're the patient, that calculus looks a lot different. And so it really kind of attuned my ear, when people talked about only benefits and not side effects, to make sure that there wasn't too much salesmanship going on and that people were really being honest about what were the trade-offs in making these choices.

Dr. Diane Reidy-Lagunes:

Yeah, you're absolutely right. We always say, you know, when you have grade-two fatigue for weeks on end, you know, as an oncologist, “Well, it won't kill you.” But it's devastating in terms of your quality of life. We often get sidetracked when we see that things are working.

Dr. Mark Lewis:

That's exactly right. I empathize with any patient who has this deep sense, the most visceral sense, that something is wrong with them and they're struggling to get the right label. It did take a lot of effort and I might even say persistence to get my doctor to take me seriously. In this case, it just turns out that my instincts were right. So what I'm getting at is I did have to be, I suppose, a little pushy and say, “Hey, listen. I know how this looks. I know it looks like I've just invented this.” And I tried to show him how the puzzle pieces were fitting together. So we talked about my dad, but my paternal uncle died from a weird endocrine tumor, and then my paternal grandfather had done the same. So in that sort of cluster of men, I could see this pattern emerging. And then I was just the next, you know, generation down.

Dr. Diane Reidy-Lagunes:

I want to just emphasize that you said that you had, what we call, this cluster, where there are more than one of your direct family members that had a cancer. I have many patients, caregivers or family members that say, “Okay, should I get tested?” So what advice would you give? How do patients or family members know if they need to be tested?

Dr. Mark Lewis:

Well, the first part is on us as the docs to take a good family history. Feel free to volunteer your family history if the doctor isn't asking for it. But I think the other part of this is to realize that thankfully not all cancer – in fact, most cancer – is not heritable. It's not going to be passed down from generation to generation. So there's this sort of combination of clues that the doctor's picking up on from the family history, and then really this very detailed genetic analysis that we can do now. This all comes together in the best possible synthesis and informs the doctor to tell the patient whether or not they need genetic testing. One of the things that's been fascinating in our field is just in the last couple years, we have realized that basically everybody with the traditional form of pancreas cancer – pancreatic adenocarcinoma – merits genetic counseling, because a small but significant minority of those patients will have the BRCA mutation, the same mutation that led Angelina Jolie to famously disclose her genetic mutation and undergo preventative surgeries. So it's changing all the time. And I would just say, if you have any questions ask. I think genetic counselors are hugely helpful in having these conversations.

Dr. Diane Reidy-Lagunes:

Yeah, absolutely. And I also want to emphasize that, you know, if your parent, for example, has a cancer that they find an inherited gene, you still may not get that. In fact, most times it's a 50/50 chance depending on the gene. So it's not necessarily something that if your parent had it, that you're definitely going to get it. And then importantly, knowing if you had it then may have implications for your other direct family members. Can I ask, once you knew that you inherited that gene, how did it affect you and your own family now?

Dr. Mark Lewis:

Yeah. So I guess ignorance is bliss. We had our first child before we knew, and – you just mentioned, and you're absolutely right – the most common odds are 50/50. And that's exactly what happened to my family. So I have two children, one who is unaffected by my mutation and one who does carry it. And, you know, without getting into the ethics and logistics of embryo selection and pre-implantation genetic testing, I'll just say that my wife and I kind of looked at the situation – we did want to have more children – and I kind of thought two things: One is, “Well, using this for knowledge, any child I have who's affected will presumably have an even better life than I've had, because we'll know this from the beginning and will be able to take steps that are preventative and not reactive.” And secondly, on an almost existential level, if my parents had applied embryo selection to me, if the technology had been available to them, I wouldn't be here. So long story short, my son does have it. He is 11, he is in robust health, and he's had this interesting upbringing where almost as long as he can remember, he's been aware of this. We had long talks as parents. I had to fall back on my own family history. All these men in my bloodline had no idea, and I really feel like that colored their experience. Like my father, for instance, had a lot of unnecessary guilt when he absolutely didn't have to. So my son Alan is named after my father and that was my way of honoring my late dad, but also recognizing that they have this connection through their genes.

Dr. Diane Reidy-Lagunes:

And just for those in our audience that may not understand, embryo selection would be that you can actually select for an embryo that didn't have the mutation. You said that your dad felt shame about cancer, because our society makes us feel that way, don't they? And I was just wondering, have you ever felt that?

Dr. Mark Lewis:

Oh gosh, that's a great question. I don't know if I have. I know my father did. We didn't really even go into his lifestyle or livelihood. He was a minister. As you mentioned in the pinned tweet, he was teetotal and he never smoked. But what's interesting is really – back to that call from the embassy about his x-ray – his cancer was incorrectly characterized to him, Diane, as a lung cancer. And this was, again, the eighties and early nineties and then, and you can argue even now, there was all of this unnecessary linkage of lung cancer and smoking. I'm not disputing the fact that smoking drastically elevates your risk for lung cancer. But the converse is that some people who are non-smokers get lung cancer, and frankly, my opinion is no one deserves to get any cancer. And nicotine is horribly addictive, and I don't think anyone should be punished or stigmatized for even, quote-unquote, lifestyle-related cancers. Anyway, that's a separate soapbox. But because my father was viewing his own disease through the lens of sort of this judgment, and because he didn't have any other explanation as to why this would've happened to him at a young age, he really felt, I think, the weight of all the decisions he'd made in his life. Just imagine sort of second guessing everything he would ever done.

And we see it even now, I think, when it comes to nutrition. One of the things that will happen – and I'm sure you see this too in your practice – is even very well-meaning family and friends will offer a host of recommendations about food or even make food for patients after their diagnosis. And I think that is a beautiful gesture. What I don't like is the implication that the patient did something wrong in the past. We are still figuring out a lot of the interactions between diet and metabolism and the bacteria that live in our gut and the cancers we develop. I don't think we should be passing judgment on anybody that develops cancer.

Dr. Diane Reidy-Lagunes:

Yeah, and I often will start the conversation, when I meet any patient for the first time, to say, “There is nothing you did or didn't do to get this cancer.” In fact, we dedicated a whole episode to lung cancer, and the motto is, “If you have lungs, you can get lung cancer.” As you know, up to 25% of our patients are never-smokers. And another episode, we had someone on who has dedicated his life into the investigation of what cancer eats, and the take-home message was cancer will eat itself. It eats sugar, it eats protein, it eats fat, it eats itself. Of course we want to eat well, and we want to exercise, and we want to do what we can to stay healthy.

Dr. Mark Lewis:

Exactly right. I think we're still trying to undo the damage of all these judgements that have been passed on patients, uh, in the past and, and even now.

Dr. Diane Reidy-Lagunes:

Yeah, you're absolutely right. And I would say, you know, sometimes we don't talk enough about that hype and hope that we will do. On any one clinic day, it's the best of times and the worst of times, right? We're going into one room and we're jumping up and down and we're giving big hugs to say that, you know, patients are NED and “No Evidence of Disease.” And then we turn around and we go and knock on the door, and it may be an end-of-life discussion. How do you handle that?

Dr. Mark Lewis:

I go on an emotional rollercoaster on a day-to-day basis, but each patient is only seeing their own experience. So when I'm with someone and the news is fantastic, and then I go next door, like you've said, and the news is grave, you know, those two things don't cancel out. The real successes sort of buoy me emotionally, but then when I go next door and things are not looking good, you know, it actually makes me appreciate the, quote-unquote, success, if you will. I think it is appropriate to celebrate when things go well, but also to realize that not every patient, unfortunately, is going to benefit from breakthroughs. I'm curious, since you brought it up, what is your approach to these ups and downs in clinic?

Dr. Diane Reidy-Lagunes:

A glass of wine at night goes a long way! Or tequila on a bad Friday. But I will say, I'm a lot like you are, that that victory in that moment is something that we hold close to our hearts. But I also think it's okay, for me personally to do my job well, I also have to lean in on the emotions and how sad I might feel, because I think that's the privilege of being on the journey with patients, and to be able to say, “We're along for the ride here, and we're in the moment, and we will deal with what we need to deal with.” And, you know, our motto here on the pod is, “Onward and upward,” and all of my patients know that motto in my clinic as well. I think that we're all having this human experience and sometimes it's victory and sometimes it's devastation. But it's being there, and having the privilege to be there with patients, I think, is a very, very critical part of the job.

Dr. Mark Lewis:

Yeah. I think presence is incredibly powerful, and one of the things I've written about previously is the patient not feeling abandoned regardless of what happens.

Dr. Diane Reidy-Lagunes:

Your dad was a minister, as you shared, and you're pretty open about your spirituality. If you don't mind me asking a personal question, does that faith go into the clinic with you?

Dr. Mark Lewis:

That's a really important question and one I actually seldom get to talk about. I have to be honest; it has sustained me. And this is just speaking as the son of a preacher man. I lean on it a lot. I often wonder if I hadn't gone into oncology, would I have followed my dad into the ministry? We had several generations of ministers that I could have followed. In its best incarnation, medicine to me looks a lot like pastoral care. It looks a lot like being present. It looks a lot like not leaving in bad times, but also celebrating good times. And so don't get me wrong, I think you can absolutely be a fantastic oncologist and have zero belief in anything outside this body or this life. On the other hand, at least for me and for some of my patients, I find it, you know, uplifting to think that there might be more than this. I think where things get a little treacherous is, I never want to impose my faith on my patient. And so I will allow them to let me know their beliefs, but almost never the other way around. I think realizing that it sustains me and some of my patients is important. And thank you for asking because I almost never get to talk about that.

Dr. Diane Reidy-Lagunes:

No, thank you. And like you said, I would never impose my own beliefs on folks. But when we have those really difficult conversations, when one is sort of passing to the other side, for example, there are moments where we can really talk about it in a way that may be a little bit more frightening to those that don't want to go there, right? And I think you probably have had this. Like some patients are like, “I don't want to go there. I don't want to talk about it.” But some people, it’s to the point that we sort of talk about signs they're going to show me when they go to the other side, you know, with double rainbows and songs on the radio. And it's awesome, you know, that a patient could be courageous enough to talk to me about it in that way. I certainly believe that a lot of my patients are even still with me today.

Dr. Mark Lewis:

That's beautiful.

Dr. Diane Reidy-Lagunes:

Yeah. Any parting advice?

Dr. Mark Lewis:

Yeah. So I would say, I have zero problem with my patients looking their disease up or treatments up online. I would just ask them to take everything with a grain of salt. Some people are trying to sell you something, and others are, you know, very legitimately sharing knowledge. I would say to our physician colleagues to be receptive. You know, if your patient comes to you and they want to talk about something that they read, don't be immediately dismissive. And if time permits, sort of talk it over. I have to tell you, Diane, some of my happiest moments have been a patient coming in and they tell me about a trial that they're eligible for that I might not have heard of or might have overlooked. And when that happens, it's remarkable. It's this perfect convergence of the patient, who's the ultimate stakeholder, using this information at their fingertips, bringing it to me, and then we make a treatment decision that's right for them. And I love that. That to me is where medicine in the modern day ought to be practiced.

Dr. Diane Reidy-Lagunes:

And what about as a doc to a patient?

Dr. Mark Lewis:

So as a doc to a patient, I would say, realize that we are human. There's a part of us that's supposed to be impartial. We're supposed to be these very rational interpreters of the literature and be very scientific. On the other hand, I don't think you want an oncologist, in particular, to spew statistics. And what I'm asking for here is not for you to pity us, but for you to realize that we are emotionally invested in how you do. And we will celebrate with you when you do well, and we'll be saddened if you're getting sick, and we will mourn you if you pass away. And I have in my office, Diane, two drawers: one drawer is the obituaries of all my patients who have passed, and the other drawer is notes and cards from those patients’ families posthumously. And the drawers are almost exactly equal in content. And what I'm getting at is sometimes I'll dip into the obituaries and remember those who have passed. Other times, I'll read the thank you notes for sort of emotional ballast, and that's oncology. There's no way of being entirely joyous and there's no way of being entirely sad. And this is a field that really mixes those two, along with, of course, cutting-edge science. And things are getting better all the time.

Dr. Diane Reidy-Lagunes:

Amen. Dr. Mark Lewis, thank you for all you represent and for all you do for so many of us. You are our silver lining.

Dr. Mark Lewis:

Thank you so much for having me, Diane. It's been an absolute privilege.

Dr. Diane Reidy-Lagunes:

If you want to hear more from Mark, please check out his podcast, “Is It Serious?” where they discuss more healthcare-related topics. Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or to send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. Any products mentioned on this podcast are not official endorsements by Memorial Sloan Kettering Cancer Center. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you may have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.