Jan 28, 2021
Dr. Mark Lewis, a medical oncologist, and director of gastrointestinal oncology at Intermountain Healthcare in Utah, discusses how his hereditary cancer led him to see life from the perspective of his patients, and he considers the pros and cons of being a social media influencer.
Transcript
ASCO Daily News: Welcome to the ASCO Daily News Podcast. I'm Geraldine Carroll, a reporter for ASCO Daily News. My guest today is Dr. Mark Lewis, Director of Gastrointestinal Oncology at Intermountain Healthcare in Utah. Dr. Lewis discusses how his father's cancer diagnosis drove him into oncology to take vengeance on the disease, and how his own hereditary cancer led him to see life from the perspective of his patients.
We also talk about how he became a social media influencer by live-tweeting his own complex Whipple procedure. Dr. Lewis reports no conflicts of interest relating to our topic today. And full disclosures relating to old episodes of the ASCO Daily News Podcast are available at asco.org/podcasts. Dr. Lewis, welcome to the ASCO Daily News Podcast.
Dr. Mark Lewis: Thank you so much, Geraldine. It's a real privilege to talk to you and your audience.
ASCO Daily News: Dr. Lewis, can you tell us how in your efforts to understand your father's illness, you discovered your own cancer when you were an oncology fellow, I believe?
Dr. Mark Lewis: That's exactly right. So cancer had been in my life since I was 8 years old. We were immigrating from Scotland to America. So I'm originally Scottish. And the immigration process involves getting a chest ray to ensure that you're not infectious with tuberculosis. It's a public health measure.
In my father's case though, he was a 42-year-old man at the time, a non-smoker, and seemingly in excellent health. And his x-ray showed this previously unknown mass occupying essentially, his entire right lung. So we got a very alarming and officious call from the Embassy saying, well, the good news is you don't have tuberculosis. The bad news is there is something very dramatically wrong with your lung. And when you get to America, you need to have it addressed.
So shortly after our arrival, we basically had to engage the health care system at a very intensive level. My father had his entire lung removed surgically. Unfortunately, that was not enough to banish his tumor, which had really spread into the middle of his chest, the mediastinum. So that required radiation. From there, however, it spread elsewhere. It became metastatic and he required chemotherapy for that, and ultimately, sadly passed away.
So that was my very emotional reason for going into oncology. It was always a feeling almost that I wanted to take vengeance on this disease. And then as you mentioned, my very first day of training as an oncology fellow, I awoke with this horrible abdominal pain, which kind of felt like nerves. It almost felt like appendicitis. It was that acute and localized, but actually what it was, was the manifestation of a high calcium level, which can also cause abdominal pain.
And that was my Eureka moment because I had never thought that my father's cancer was hereditary. I always thought it was just really, really bad luck. But he had had high calcium to his entire adulthood. And there's only really two conditions that can give you that in consecutive generations. One is entirely benign, familial hypocalciuric hypercalcemia. And the other is very much not benign, and that's the hereditary tumor syndrome, multiple endocrine neoplasia type 1.
And I realized again, sort of hit me like a bolt of lightning. Oh my gosh, my father's tumor was caused by this syndrome, MEN1. So I went immediately to the internist I'd been assigned at Mayo, the first week of oncology training, and said, yes, I'm an oncology fellow here and I have a cancer syndrome. And it took a bit of convincing because that sounds like hypochondriasis, but in my case, I suppose lucky to be right. And that's really informed my entire training and career, that I can't avoid seeing it through the lens of a patient-physician.
ASCO Daily News: And so you are currently managing your condition?
Dr. Mark Lewis: That's exactly right. I've been very fortunate. Oncologists are not required to take a taste of their own medicine. So my wife is a pediatrician, and they did something very clever in her training. Which is they made the pediatric trainees taste all the antibiotics they were going to prescribe so they could understand why the children were finding them so unpalatable and why parents were going to have such a hard time getting the kids to take their medicine.
Oncologists don't have to do chemotherapy, nor am I advocating for that. But I have been through the experience now of several surgeries. Most notably, a Whipple procedure in 2017 to address a threatening tumor in the head of my pancreas that had become malignant. And I also understand the import of a life-changing diagnosis, especially one that has ramifications for your professional identity and how you interact with your own family.
ASCO Daily News: Yes, and you've written and spoken extensively about your experience. You've written many blogs and done a lot of interviews. Do you find the writing process to be therapeutic? How has it helped you?
Dr. Mark Lewis: Yeah, it's incredibly cathartic. And I do it for first and foremost, the most selfish reason. But I have to tell you the background there. So when my father was going through chemotherapy--and this is going to me on several levels. His study was next to my bedroom. And he actually wrote a book while he was alive and while he was very conscious that he was dying. This was his life's work, and he really worked his absolute hardest--even on long days after treatment--to finish it.
And so I would hear him clacking away on his typewriter. And it struck me just that commitment to the written word, and I realize how valuable it is because he's been gone now for over 25 years. But when I read his book or read anything he's written, it's almost like I can hear his voice. And I realized, it's just such a powerful legacy.
So maybe I'm overestimating the extent to which my kids will want to read what I write, or if my tweets will be archived ad infinitum. But I do think it's really a powerful form of self-expression and one that can really give us a sense of permanence. I talk a lot about legacy building with my patients, and this is partly my legacy.
ASCO Daily News: And what has it been like being a patient among many oncologists, your peers? What is that like emotionally?
Dr. Mark Lewis: I find the oncology team enormously supportive. And I do think there's a massive gap between how the public perceives us and how we actually are. We're not chemotherapy dispensing robots. We are human beings, we socialize. We actually, I think, as a general rule, [have] a pretty good sense of humor. And I think that's our emotional ballast against all the really grave things that we deal with in our clinical practice.
So I'll say a couple of things to your question. One of which is, because I was diagnosed as a trainee, it was really remarkable and touching to me how many of my faculty at the time would take me aside in confidence and say, hey, listen I've dealt with cancer too. And I have a pet hypothesis that oncologists are potentially slightly more likely than other specialists to deal with cancer because we tend to be drawn to it through family history.
A lot of us love the science, and I think it's a huge part of what's moving the field forward. But there's also this human element. And for you to choose to go into this field, you either really have to love cell biology and/or have some sort of emotional anchoring to this disease. And so again, I think there's a slightly higher predisposition to cancer among oncologists.
And the other thing I'll say is especially online now, the sense of community in our specialty is remarkable. I've seen it go in the course of about a decade for social media being viewed as something frivolous to now be almost mandatory to connect with your peers. And I think that was the case pre-COVID-19, but I think it's really intensified during the pandemic.
ASCO Daily News: Absolutely. Social media is huge and is a very active space in oncology. You are incredibly popular on Twitter (@marklewismd). You have almost 44,000 followers. How do you feel about social media, Twitter these days? Following a year in which these platforms were used to spread lies confusion and discredit the scientific community amid the COVID-19 pandemic, did that alter your approach or your feelings about it?
Dr. Mark Lewis: It did. And again, I've seen interaction among doctors and even use the platform in the first place go from being something frivolous to being something that actually is a professional calling. And I think in the last year, it's been so important for those of us who feel inclined to speak up and try to be an antidote against all this misinformation.
It has changed my view of Twitter. I used to be extremely naive and think that if I said, listen, I'm just an oncologist trying to help patients. I'm a patient myself. I thought that just by acting in good faith, people would accept what I had to say as authentic. In the last year though, you're right. The narratives around science have, unfortunately, been really politicized and it's been horrible to see some of the vitriol directed towards my colleagues.
I had a very nasty encounter with trolls last summer that really soured me on Twitter for a while. But then I realized if I deactivate my account, it's sort of like letting them win. And so I love 99% of my interactions on Twitter. And I really try to be a person on there. Sometimes people say, oh, you're being too serious. You need to lighten up.
And then when I lighten up, they tell me I'm being too jokey for an oncologist. So I don't think you can ever quite win totally, but I think it's still so important to be engaged. And you're right, it really is the only way that we can actively combat lies that are being spread about science and medicine.
ASCO Daily News: I've really enjoyed reading your stuff on Twitter. You've made me laugh quite a few times on a kind of dark and dreary day. I'm looking at the headlines in the news and everything, but you took it one step further. In 2017, you had a Whipple surgical procedure, and you arranged for this to be tweeted live by your institution. That is remarkable.
By doing that you demystified this disease, you raised awareness about the procedure. Being a patient, physician, and educating patients and advocates in this way, and showing physicians that doctors get cancer too is incredibly powerful. How did that all happen?
Dr. Mark Lewis: Yeah, exactly. It's a great question. So actually there was a little bit of precedent here in me being an exhibitionist in the operating room. So when I was at Mayo, the first surgery required was the removal of my parathyroid glands, which classically become overactive and enlarged in my syndrome.
And the endocrine surgeon said, you know, your glands are so impressive. I'd really like to make a video for training purposes. Would you mind if we recorded this? And I said, oh, absolutely. And actually, it's really fascinating for me to watch with almost literally out of body experience, this man cut open my neck, very carefully move aside the nerves that supply my vocal cord and protect my carotid artery and then remove these glands.
And so that actually had planted the seed in my head of, wow, pictures really are worth a thousand words. And video and photos are so powerful when you're trying to tell the story of an operation. So fast forward almost six years later, I found out I was going to need the Whipple procedure. Now as a gastrointestinal medical oncologist, 85% of my patients with pancreatic adenocarcinoma, when they come to me they are inoperable.
And in fact, the goal, which is not always attainable sadly, is to get some of those people from unresectable to operable. But here's my point. Even in the 15% who show up and are upfront operable, I have seen several of them, many of them decline the operation because it sounds so monstrous and radical.
And my joke is, which again, people might take the wrong way is that during the Whipple, the surgeon does to the upper GI tract what a Picasso does to faces. So you take all the parts you recognize and just rearrange them in cubist fashion. And that really is what it looks like if you just look at the diagram. And I realize myself, when I was staring at the anatomy of the surgery, I was like, this is really complicated unless you go through it step by step. And that's again, when I had my epiphany that wow, I wonder if I could use Twitter to do just that.
And so it required a lot of buy-in and support from my institution. Thankfully, they were completely on board. They have a wonderful social media team here at Intermountain. And then my surgeons had to agree because this was inviting nearly seven or eight people into the operating room beyond the scrub nurses and the anesthesiologist and everyone else who would normally be there. But they did it.
And when I woke up from the operation, I thought I was hallucinating from the anesthesia. They told me I'd had three million impressions while I was under. So it was really an incredible experience for me. And then what was really rewarding on the patient side is, it's not a fun operation to go through or recover from, but the support from around the world from people I'd never met, it was just incredible.
And again, there's lots of negative aspects to social media. And I have experienced some of those myself. But gosh, it is overwhelmingly positive. And that was just an amazing experience to go through as a person. My wife and I found it an incredible source of support, again, from all these strangers who all of a sudden were invested in my recuperation. It was really just very heartwarming.
ASCO Daily News: Excellent. And you're a great example for your patients. No wimps allowed, huh?
Dr. Mark Lewis: Well, you know what's really interesting in the information age is provided patients have the means and the access to sort of pick their oncologists, some of them actually seek out because they think that quote, "I get it." And again, I have to be very clear to them, I have not yet had chemotherapy. I might need it. I've not yet had radiation. Same answer.
But I do understand their perspective again, of being given a very serious diagnosis. In my case, I am technically incurable unless CRISPR and gene editing allows me to somehow excise my pathogenic mutation. So I understand the notion of being presented with an illness that you're likely never going to be entirely rid of, even psychologically. And so I think that appeals to them, even if they know I haven't had chemotherapy.
ASCO Daily News: Right. Well, let's take a look at the GI field then, and advances that have shaped your treatment and your thoughts more generally on developments in the GI space.
Dr. Mark Lewis: Absolutely. So I think shortly after this recording and when this airs, we'll have conducted the 2021 GI Cancer Symposium. And having already reviewed many of the abstracts, I think first and foremost, I would say that immunotherapy is no longer just for certain forms of lung cancer and melanoma. I think it is absolutely coming to the fore in GI cancer too.
In fact, I just tweeted this morning--I vividly remember using immunotherapy for the first time during fellowship. It was 2011, so a decade ago. It was ipilimumab and it was in melanoma. And I watched this man's metastatic melanoma melt away. And I thought even in my young career, I didn't think I would get to witness this.
We took one of the most fearsome and deadly diseases--I'm not saying we totally removed it's sting. But we actually rendered people, some of them, into durable remissions, which are just absolutely incredible to see. And now those drugs are being repurposed and we're getting better and better at selecting which patients should receive them, and then also figuring out sequencing.
There was a very strong argument in the New England Journal of Medicine by Dr. Axel Grothey that for certain forms of colorectal cancer, immunotherapy should now be considered first line (DOI: 10.1056/NEJMe2031294). Which again, is truly remarkable. Here's my mentor at Mayo who taught me how to manage colon cancer, I never thought I would hear the man say that. So that, I think, is the first thing I would say.
The second thing I would say is genomics--so testing the genetics of the tumor rather than the person--is allowing us to find these rare mutations that are shared across histologies. So when I was trained-- and I still think the dominant paradigm. It was all about, where did the tumor start? What is its anatomic site of origin? Then we tailor everything around that.
Now we're finding that very disparate sites of origin, say thyroid, lung, biliary tract, can share driver mutations. And we can carefully--and only after rigorous study--take drugs from one disease type and actually extrapolate them successfully into another. It doesn't always work. So the reason we do trials is that things that are biologically plausible, don't always bear fruit when they're really experimented upon.
However, it is incredible to see drugs, again, for the melanoma space all of a sudden transitioning to certain subsets of colon cancer. And my main thesis here is that we're taking very common cancers--like colon--and turning them really into umbrella groups of all these really smaller and often molecularly defined subsets. And that level of sub-subclassification is allowing us much better to individualize care.
And I think that really is the other theme I'm seeing emerge out of, not just this year's GI Cancer Symposium, but many of the recent meetings, both the ASCO Annual Meeting and these sort of more histology specific conferences.
ASCO Daily News: Absolutely. It's truly remarkable how cancer treatments have advanced since your father's experience with very toxic treatments.
Dr. Mark Lewis: Absolutely. So when I look at my patients, I can't help thinking of my dad. He passed in 1994. And the reason I bring that up is his treatments were really indiscriminately toxic. They were basically given to him on the principle that these very noxious medicines are going to kill the rapidly dividing cells faster than the slower dividing cells, and you're going to incur all these toxicities. And he did.
He lost his hair, was intractably nauseous, had no immune system, all the classic stereotypical side effects people associate with chemotherapy. And rightly so, given that history. The thing is he passed before the completion of the Human Genome Project. And now I'm really dating myself, but I remember doing a paper in high school about the scale of this grand experiment.
And it took thousands of scientists working across the globe, years and years and billions of dollars to figure out our code. But now that we have it and now in the interim with all the advances in computers and Moore's law allowing us to fit more and more transistors onto smaller and smaller chips and speeding up processing. We can accomplish essentially the same sequencing at least as the Human Genome Project in about 2 weeks and for about $1,200 on any given person's tumor. And it's just absolutely remarkable.
Again, thinking back as a high school student--because that's when I lost my dad--I just couldn't envision where we are now. Now having said that, it's not time to rest on our laurels. One huge problem, I think, is the disconnect between the pace of progress and the pace of payment. So I tell patients all the time, I practice medicine.
I went to school. I did residency and fellowship to do this. But there's this whole other apparatus, which is the business of health care, and getting payers to adopt plans that cover all these new technologies is enormously complicated. And we actually have to be very careful, especially at our conferences but even in our clinics, not to overpromise and underdeliver to our patients.
Because you can come back from a symposium like this one and be buzzing with all this new information and promising results. But if you can't enact that for the patient, it's almost worse than if you hadn't told them about it in the first place. And so the next generation sequencing, again, the cost has come way down, but it's not zero. And we already have a lot of financial toxicities these patients incur, both through tests and treatment and also through opportunity costs and lost jobs and wages.
So I think that's the other part that gives me a little bit of pause is for all the science that is coming forward at breakneck speed, our ability now to look for circulating tumor DNA, which is a far finer resolution than any scan than we've really ever had, I am very worried about how to get all this paid for. And I think we have to be extremely judicious in when we've already assessed and really thinking about the impact they have on the patient and their wallet.
ASCO Daily News: Well before we wrap up, I'd like to ask you an important question about hereditary cancer. You have a daughter and a son. And your son has the same syndrome as you. So I'm wondering how you spoke about hereditary cancer with your son?
Dr. Mark Lewis: Yeah, thank you for asking. So one important doctor to mention here is my wife, Dr. Lewis, who's a pediatrician. And she's been absolutely instrumental in helping me communicate with our kids about illness. In some ways that's what she's professionally suited to do, but as you might imagine, as a mother and as a wife, it's difficult for her to be entirely impartial.
So one thing we did--and people have told us that they don't entirely agree with this. But parenting is something you get to decide, and sort of see as you go along if it's working or not. We've always been very open with him, not only that I have this illness, but he inherited it from me. So basically, for as long as he can remember, it's been part of his normal health care maintenance.
And again, I'm not saying this is categorically the right way to do it, but we prefer this approach to just dropping a huge amount of news on him when he becomes an adult. It could really change his worldview and even his life and career plans. And so by sort of pseudonormalizing it, he lives with it. And again, luckily with this syndrome you don't become symptomatic, typically, until your late teens or 20s. So his childhood development right now is essentially the same as any other kids.
But the larger point I'd like to make is I really think that cancer is, if not always hereditary, certainly something to talk to your family about. In our medical records, one of the real pet peeves I have is when it says family history, colon non-contributory. That is almost never the case. I'll point to my own pedigree.
That little detail about my dad's high calcium level wouldn't have been captured, even if you're asking about a cancer history. But it is actually incredibly relevant and was the key clue I needed to see the pattern in my own family. So I think it's really important to talk. And I know it's not easy or comfortable, but it's really important to talk about the history of illness in your family, record that comprehensively but succinctly, and then get that into your medical record.
ASCO Daily News: And I suppose as an oncologist, if you have a patient who has a hereditary cancer, that's a delicate conversation to have. That patient likely does not know how to address this issue with their children.
Dr. Mark Lewis: That's right. And so genetic counselors play an absolutely critical role. I couldn't do my job without them. And I think they also are extremely good at walking the patient through the incomplete protections against genetic discrimination. So the Genetic Information Nondiscrimination Act of 2008 was actually a wonderful arguably bipartisan piece of legislature that still offers quite a lot of protection, but not total protection.
So basically, as you likely well know, it protects you against unemployment. So your employer can't fire you because your genetic condition. They're not supposed to change your benefits or wages. And it also is supposed to protect your medical insurance premiums. However, it does not protect you against changes in premiums regarding life insurance, disability insurance, or long-term care insurance. And I have to tell you, I got this real-world education in this.
Again, first-year oncology fellow, I was so focused on sort of the clinical diagnosis, I had no idea really about the other implications as a relatively young man starting his career at that time. So job-wise, I've been very fortunate. But these other forms of insurance have certainly--I've been penalized financially. And I think it's really important for patients to know that, especially as you do the ripple effect of cascade testing, of not just the index patient, the affected patient in front of you, but all of their generations of relatives around them.
ASCO Daily News: Well, Dr. Lewis, is there anything you'd like to add before we wrap up today?
Dr. Mark Lewis: I'll just tell you, I've never been more hopeful. And I say this with some trepidation at the beginning at 2021. I think in some ways, we thought 2020 was going to be this singular horrible entity and the calendar was going to change the new year, and everything was going to be wonderful. And clearly, that's not been the case.
However, as a scientist and as a patient, the progress is just absolutely remarkable. And I can tell people, if I practiced the way I was trained to practice, it would be malpractice. And I've only been out in practice for a decade. And so I am so excited about where the field is going. I think it is only to the benefit of our patients.
It doesn't mean that we haven't lost far too many people in the past, and that patients aren't currently suffering. It makes me cautiously optimistic about the future.
ASCO Daily News: Well Dr. Lewis, thank you so much for sharing your personal story and valuable insight with us today on the ASCO Daily News Podcast.
Dr. Mark Lewis: Absolutely. My pleasure, Geraldine. Thank you so much.
ASCO Daily News: And thanks to our listeners for joining us today. If you enjoyed this episode of the podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts.
Disclosures: Dr. Mark Lewis
Consulting or Advisory Role: Boehringer Ingelheim, Shire
Other Relationship: Medscape
Disclaimer: 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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.