A Doctor. His Brain Tumor. A New Perspective. – Chasing Life with Dr. Sanjay Gupta

Welcome to Chasing Life. Today’s guest is Doctor Bobby Mukkamala. He is a practicing head and neck surgeon. He is also president elect of the American Medical Association, which is the largest professional organization for physicians in the country. They have more than 270,000 members. But perhaps most importantly for today’s conversation, Bobby is an old friend. I’ve known him since the early 1990s, when we were both medical students at the University of Michigan.

You and I would be in the reading room studying for half an hour. Then we’d go downstairs to the refreshment area and hang out there for an hour. Go back up and study. So the ratio of studying to hanging out downstairs was less than ideal for learning.

But recently, I got the kind of news that you never want to get, especially from an old friend. Here’s what happened: a few months ago, Bobby was at an AMA conference giving a speech, something he does all the time, and partway through it, something really strange happened. The words were coming out of his mouth, but they didn’t make any sense.

It was more than gibberish, but it didn’t come together as a sentence. And somebody actually stood up and said, you know, we’re having a hard time understanding you.

This wasn’t nerves. I mean, Bobby was in a room full of friends and colleagues. Some of the doctors were immediately worried that maybe Bobby was having a stroke.

They’ve heard me give speeches, and they’ve never heard me sort of mess it up like that.

No surprise, he got checked out. An MRI revealed the problem a glioma, a primary brain tumor eight centimeters in size, and it was located in his left medial temporal lobe. Not too long after the diagnosis, Bobby wrote to me and we had a long chat. He wanted to talk, and he also asked if maybe he could come on the podcast to talk about what had happened to him. Of course, my answer was an immediate yes, and I realized something like the good doctor he is. Bobby had been chronicling the whole experience. He even had a Google folder that he called Tumor Reflections. When I read these reflections, I found them to be so poignant and so instructive as well. I thought there were some really valuable lessons in there, and today I wanted him to unpack some of those reflections. Some of them are about the diagnosis and the science and the treatment, but a lot of it was about what it’s really like for someone to be diagnosed with a brain tumor, what it’s like for him, what it’s like for his family, what it’s like when the doctor becomes the patient. He also wanted to talk about health care. And I can tell you without a doubt, this experience being diagnosed with a brain tumor has made him think about health care in an entirely different way. And I think it’s really going to inform his role as the president of the American Medical Association. So today we get a chance to talk about all of that. A really personal story with really profound meaning. I’m Doctor Sanjay Gupta, CNN chief medical correspondent, and this is Chasing Life. So when Bobby and I conceived this idea, we decided that we should talk twice. Once before his operation to remove the tumor. And once again, assuming all went well, after. The good news, I’ll tell you right away. All did go well. The first time we spoke was in December, just two days before his operation. We started by just chit chatting like old friends do. Then I asked him, what is it like to be told that you have a brain tumor? And what does it mean to face the unknown? Even as a physician yourself. You’re back home. You get the MRI scan. But how do they give you the results? And who tells you?

‘Well. So this was an MRI scan that there’s a neurosurgeon in town and said, hey, we can fit you in if you want to come tonight. So I went at 9 p.m. it was just the tech and AI that were there, and I had the images and they weren’t able to put it on a flash drive or a CD-ROM. So I’m literally with my phone taking pictures of the monitor. And, and she’s pointing out that I have a little bit of a deviated septum. And in my mind I’m thinking, yeah, and there’s a big old brain tumor sitting there too.

You saw it right away.

Oh, yeah. Right away. Yep. Clearly saw that it didn’t belong. And so as soon as I had those pictures called my dad, who’s a retired radiologist, he was in India with my mom at the time. And I said, hey, can you take a look at this, these images with me? I had him on a video call sharing my screen, and he looks at the pictures and then he looks at the name, sees my name on it, and says, hang on, let me call you back. He had to kind of get himself together. He calls me back. And, you know, I lived a couple of minutes from where that scan was done. So he’s on the phone with me reviewing it, saying, hey, we’ve got a problem. I get home. And by that time I’ve added my two sons who are out of town. They live outside of the house now that they’re 24. Got them on the phone. Nita, my wife is at the house. And so now we’re all at the den. And that’s when I told everybody at the same time that I have this brain tumor.

So it sounds like at the same time, you are sort of first processing this. Your your family was there processing it with you. What’s that like, Bobby? I mean, I think anybody listening. Certainly. When I heard the news, you can’t help but think of your own family and how you would deal with this, this sort of news. How did you process it?

Yeah. You know, I guess I’ve always been more Spock like in in looking at these things. Sort of. Yeah. Okay. What’s the next step? And so immediately I was, you know, planning the neurosurgical consult, you know, within 60 seconds, okay, what do we do now? But, you know, that’s not fair to those around me. And my mom, who was in India at the time, was also, you know, on the call with my dad and she immediately broke into tears. And Nita is also, you know, very emotional about it. Obviously, the kids are in disbelief and wondering if this is dad just sort of making a joke. And so ignoring the emotional consequences on those that are equally affected is something that I’ve learned isn’t appropriate. And and I’m a work in progress in that regard.

‘You say you’re Spock- like, do you think you’re not going to process it the same way as other people are? Or you just haven’t done it yet?

Let me put it this way. I think that, you know, Postoperatively, the main question mark about the quality of my life afterwards will be my ability to speak. And that’s the one that’s not like a 1% chance of being affected, but higher than that. And so I can see myself waking up in the emergency room wanting to say something, hearing myself say what I want to say, and then having this enormous decompression and relief and maybe at that moment, you crying tears of joy at that point.

When you first saw the MRI scan and you knew there was a tumor there, was it Spock like at that point?

Yeah. I mean, there really was never an emotional part of that. Not even a second of that. It was like, okay, I’ve got a brain tumor now what? And that that whole process was seconds.

Do you think that that’s that’s normal for physicians or is that something that’s just part of your personality or what do you think people are to take away from that?

Yeah, I think it’s probably more my personality and again, not necessarily something admirable, just an aspect of my personality, because I’ve seen other physicians have a more emotional response to their own health and those of their loved ones and the people around them. And so I think it’s probably more my personality, but to some extent also informed by knowledge of exactly what to expect. Right.

You obviously spoke to a neurosurgeon. You spoke to several neurosurgeons getting opinions. What did you. What did you hear? What did they tell you?

‘Yeah. Yep. So this was also something that I feel quite blessed to have had this experience related to this diagnosis. So immediately, you know, we put word out there, you know, I, as president elect of the American Medical Association, have a brain tumor. And so now within a matter of days, have appointments set up with 3 or 4 of the the busiest, most well known glioma surgeons in the country. And that’s really a luxury to be able to have that. And and when I think about it, you know, I live in Flint, Michigan, right. 4503 is my zip code. When I look at life expectancy in my zip code relative to 48439, my parent’s zip code, there is a more than ten year difference in life expectancy with ten miles on I-75 between where I live and where my parents live. And yet, even within my zip code, my access to the world’s best glioma surgeons is so different than somebody that lives three blocks from my house in that same zip code, where they’ll still be waiting for prior authorization for their MRI scan, let alone finding out that they have a glioma, let alone getting the opinion of the top glioma surgeons in the country. And that immediately was something that went through my mind. It’s something I was enormously grateful for. And that’s when I started to kind of write down what I read created in my Google Drive that I call my tumor reflections. Yeah, the the blessing that I have. And I, as the president elect of the American Medical Association, that should this end well for me and I have the ability to speak, have that experience, to try to close that gap. I’m not naive enough to think that that that gap will close completely, right? That the guy three blocks from my house will also have access to these opinions in that short of a time. But at least to narrow that gap is my goal.

I am curious you’re getting all these opinions. I’ll preface by saying there was a great book written by Jerome Groopman called How Doctors Think. And the point that Doctor Groopman was making in his book was that we’re not really necessarily taught how to deliver this sort of news to a patient. We know what we’re supposed to do. We may know the right technique and use good judgment. But that interpersonal communication, especially at the time of call it crises, meaning, you know, right in the acute moment where you’re giving this news can vary very much from from one doctor to another. What was that process like? Did people deliver the information the same way?

Similar, but with different styles, I guess is what I would call that, right? And so there’s some that put themselves in my shoes. Right. Say, “if I were you. And your priority is to be the president of the American Medical Association next year. Maintain as much brain function as possible so that you can go across the country. Spend 200 days of the year on the road giving speeches. This is the best way to preserve function.” Right. And so they didn’t assume that I just wanted to live as long as possible, that the quality of that life, my priorities within those years was something that some of them acknowledged. And then other ones with the same technical skill, the same ability to do that same operation and maximally sort of debaulk or remove as much tumor as possible. That was their main priority, right? Without acknowledging where I was with my goals.

Right. I get I’m sure you get this all the time as well, Bobby. You know, people will say, who’s the best person for X, you know, and and it’s a it’s a challenging question actually, because for the most part, you know, I don’t even see my partners operate at the hospital. I see my residents operate. They see me operate. If you want to know who the best is, probably ask the nurses because they’re the ones who operate with everybody, right? Yeah. How did you decide?

Yeah. So for me, once the priority became clear. You know, the priority is something that I discussed with my family. And even though the president of the American Medical Association is important to me, and I wanted to do a good job for my family and I, the number one priority wasn’t doing that job as best as possible. It’s living as long as possible with my family and be there for my kids wedding, be there for grandchildren, and anything that took away from that was not where we were. And so once I made that decision, then it became an issue of, okay, who’s best able to get me to that point? And so after these, you know, half a dozen virtual appointments, we found somebody that as soon as we finished that zoom call, this was a telemedicine visit I could just see and then immediately hear the voices of all of my family members that participated with me in all these zoom calls. That this is the person that we have the most confidence in. And it really came down to how many of these have you done?

How is Nita with all this?

Yeah, that’s where it gets the toughest. I mean, you know, I the I’ve shed tears a few times in the past few weeks, and almost all of them relate to observing the sadness of those people that loved me the most. Right? Watching my mom cry the first time I’ve ever seen her cry. Watching my dad cry. You know, as we do estate planning, right? What are my desires at the end of life? Those are the moments where I start to shed tears.

We’re obviously here talking about this. You’re slated to become the president of the American Medical Association in June. It’s. It’s a huge job. Did you ever consider not going public with it? I mean, how hard was that process for you?

‘Yeah, it was a pretty quick decision. Of course I did think about what should I do as far as relaying this to other people. And there was really there is a practical aspect to it. And then there was sort of the more thoughtful aspect. The practical aspect was, how the heck am I going to keep track of who knows and who doesn’t know? But then the more philosophical aspect was, you know, I’m in a unique position to be able to opine on the health care system. As I’m navigating it as a patient for the first time. Right. And there are lessons to be learned from that. And this helps to inform me to be a better leader of the American Medical Association when and if that time comes. And the only way that happens is to learn from other people, share this experience with other people, and collectively work to improve the system. I mean, at the end of the day, when I think about the health care system in our country, it’s an amazing country to have an eight centimeter medial temporal lobe tumor, right? The fact that here I am planning treatment with surgery day after tomorrow and doing pre admission testing and knowing that I’m going to get the best care available on the planet, and yet also knowing that if I have pre-diabetes in Flint Michigan, my ability to find that out, let alone prevent it from turning into diabetes is some of the worst of all developed countries in this world. How can that be possible? I mean, I can’t wait to be on the other side of this diagnosis, to be able to work towards raising the level of care for things like chronic disease in our country.

Hey, I’m sending you a lot of love. I’m sending you a lot of positive energy. I’m sending you prayers to the extent that you want them. Your operations in two days. And I’m hoping that we can talk as soon as you’re ready afterward. And and you’re going to do great.

I appreciate that and very much looking forward to having a follow up conversation to this. Being on the other side of of an important day in my life.

‘After the break, Bobby is going to share what happened in the operating room, and we’re going to get into the biggest lessons learned about navigating the health care system and making some pretty tough decisions along the way. Stick with us. Bobby, how are you? How are you doing? You look good. I’m looking at you. I’m. This is like the post-operative visit that we’re having here.

It is thanks. You know, it’s it’s interesting having your brain worked on because, you know, I, I feel pretty good, and I know, and I look in the mirror, I look reasonably good, but it’s the brain function that really tells my, my wife and kids that, oh, yeah, this guy just had an operation, did something that I’m learning. I shouldn’t put a timer on because I’m only not even six weeks out, five and a half weeks out right now and and things will improve. I go to speech therapy and different things like that to try to get from average to as best as I can.

So far so good. But let, let me, let me just go back. Last time we spoke was right before you were going to have the operation. Tell me how that how that day went. How did you wake up that day? How did you feel?

‘It was exciting in the morning in a anxiety producing way. You know, you go to the pre-op holding, you disrobe and put on the the surgical outfit, and then the nurse comes in and, and what’s amazing is that to go from that moment to the next memory was basically them giving me something, you know, sedating in a way to the operating room through the IV. And then that’s the last thing I remember. And then not anything in the recovery room, but in the neuro ICU, kind of waking up and having this, you know, the dressing on my head. And then off and on for a few days of slowly more and more awareness, getting woken up every hour, every couple hours for questions and assessments and medication.

Going back to the operating room, you had what’s referred to as an awake craniotomy. So awake brain surgery. Do you remember any of that? Were you asked to name objects or count or anything like that?

No. Those four moments of being awake were nothing to do with the questions. And so even though I was sedated, I was still conversational, but not in a way that I remember. Right. And so that’s the same kind of thing. Like when you get a GI procedure and you’re sort of sedated for it and you’re, you’re, you feel like you’re the funniest guy on the planet talking to your, your, your gastroenterologist or in this case, a neurosurgeon. We’re doing it in a way that you have no memory. As a physician, as a public physician, you know, upcoming president of the American Medical Association. It made me a little nervous. Like, what the heck did I say, you guys? I want you to remember.

How nervous were you that morning? I mean, you’re a spotlight guy, by your own admission. But were you were you nervous? What was it like talking to your family?

Yeah. You know, up until the very last moment, the moment that they put the sedation in me, it wasn’t a fear of anything. It wasn’t anything related to a concern about me. It was more what my kids were going to go through, what Nita my wife was going to go through, what my parents were going to go through as they were waiting for me during surgery, because there’s a 1% chance that things don’t go well at all, a 10% chance that I survive, but with a huge complication, unable to talk. And so it was more what they were going to go through in life should I be in that 1% or even in that 10%? I wrote an email to them that I did that several days before, and I scheduled it to hit their inbox on their phones at noon of my surgical procedure. And it was basically it was the expression of love, expression of future past, that sort of thing. Not a long email. I knew that life had treated me in such a way that I had the best option possible, and so there was nothing for me to be afraid of.

You have used the numbers 1% and 10%, and you know, in the moment I think numbers become somewhat meaningless, to be honest.

Yeah.

What did you learn about conveying risk?

Yeah, it you know, I you know, when I talk about tonsillectomy, when I talk about doing sinus surgery and I talk about removing a mass in somebody’s larynx as an otolaryngologist, it’s exactly as you described, right. That that we sort of we give the numbers. Right. There’s a 5% chance of having some bleeding after tonsillectomy. It’s not usually a big deal. And it’s just it’s almost a speech. It’s so routine. In fact, when I heard it, it seemed the exact same way. Right. It’s almost just going through a list. But when I’m on the receiving end of that, I think, okay, 1% is low, But that’s one out of 100 people, right? And all of a sudden I have to take the perspective of, okay, I could easily be in that 1%, right? I mean, it’s low, but, you know, if there’s a 1% chance of getting into a car accident, that’s a car accident every few months for me, right? Because I drive to work every day. So what seems like a really low number on the delivery side as a physician is not something that can just be sort of like in a second, have it disappear from your mind because it didn’t.

Probably every surgeon that you may have met with would would sort of convey similar risk numbers, is my guess. Yeah. And yet you chose these surgeons. Why?

It was more the comfort with the number of cases that this person does. You know, and initially I was going to go to a place more locally that did 100 cases a year, but then I met this person that does 200 a year. And so all of a sudden a lot is even more and, you know, ten years longer in his career. And those are the things that basically said, yeah, this is this is how we are going to do.

It is the kind of information that you’re talking about, Bobby, is that is that readily available for for people who are listening and perhaps trying to choose their own surgeon or their own doctor for certain things? Can they collect this sort of data?

Yeah. I think it’s nothing that I’ve ever seen written. It’s not what you see on a website for a surgeon or a university or any sort of place like that, but it comes from the conversation, and I think that’s the opportunity to ask those questions. But, you know, you you do it in a way that doesn’t come across as, as critical, but more, you know, like, would you mind letting me know how many of these have you done in your career? Is it something that’s one thing compared to ten other neurosurgical procedures that you do, or is this the only thing you do? I think that’s that’s where you get that information and it helps you to make a decision.

How about personality? How much of of a role or sort of part of the decision making was that for you?

Yeah. You know, it’s a great question. Because I had an opinion about that as a surgeon and now as a patient, you know, what do I think about that? And I think it’s pretty similar. And that is if you do the high number of procedures and your data shows that the outcomes are good. If you happen to have a personality that is arrogant or taken up 90% of the conversation, not allowing much conversation, that sort of thing. And I think the same thing about me. Right? So when I talk to a patient about tonsillectomy and it’s a ten minute conversation and I go through it all like a speech and it’s all very rehearsed to me, which is exactly what it sounds like because it’s 20 times a day. I know that there are patients that leaves it feel like there are deer in headlights, like, Holy cow, I don’t remember anything that he said. Or, you know, he’s talking so fast, that sort of thing. And it reflects on my personality in a in a way that isn’t great. But yet my numbers, my patient is going to have the best results available. And so when I hear this from a surgeon whose personality may be a little bit odd on the on the screen, which it wasn’t, but if it was. But yet the numbers are fantastic. I prefer the numbers, not the personality.

Yeah. You know, I would feel the same way. And, you know, I think you and I probably both know people who are outstanding surgeons but don’t have great personalities. And some of these folks are friends of mine. They may be listening right now.

They probably know who they are too.

They probably know who they are. And, you know, it’s not that there’s an inverse relationship between the two because I think someone like you, you’re you’re you’re a fantastic surgeon and a fantastic personality. But would you say that’s rare?

It’s. Yeah, it’s definitely not anything to be counted on. I think that it is probably rare to find somebody that inspires confidence because of the emotion they create and has the performance to add to that. Because you hear about the opposite a lot, right? Where somebody is amazing personality wise, but yet has a higher rate of complication, that sort of thing. So I think it is probably rare to find both, but that’s it’s an experiment that patients have to go through.

You were able to very quickly get lots of opinions about your brain tumor. Do you think that that level of care, given that we spend over $4 trillion on health care in this country, that level of care should be available to everyone? Can it be?

Do I think it should be, yes. Can it be to some extent? Certainly more than it is now. But I guess I’m also realistic when it comes to things that I want to accomplish based on my knowledge. I need to increase access to perform care, even the cost of care, right? I mean, as a as I look at this, this was in December, my surgery, and by the end of December, because I hadn’t spent anything as a as a healthy 53 year old that year, my 18,000 deductible needed to be paid before the insurance company would take would start taking over that. And so these are things that have a huge effect on people, right? I luckily thank the Lord. That’s not something that affects me, but it does so many people in this country and those that’s the gap that we need to close.

Given everything you’ve learned over the last six, eight weeks now, what were there any insights that you gleaned that you might offer up to people who may be listening, planning their own operations in terms of their preparation?

You know, what I would say to people is that you have to be an active participant in this process. You need to be the captain of that ship with your physician and if you can, and it’s a luxury having a team that’s involved with that, right? Having at least one other person there, especially for things that are serious. And now, as a physician, when I saw a patient with larynx cancer and they would come in by themselves knowing what I know now, having experienced it as a patient myself, I would say, hey, you might want to bring somebody with you because there’s a lot that we’re going to talk about and some of it’s going to be really scary. And having somebody with you will help you remember that. That’s nothing that I said before, right? It was never even occurred to me. I was like, whoever comes in, that’s who I’m talking to. It was stupid on my part. But yet as a patient now knowing the benefit of having one other person in that room, it’s such an teaching experience for me as a as a provider.

These types of insights are so important. Bobby, I think I’ve always been struck by the idea that let’s say you moved to a new neighborhood, you figure out your kids schools, you figure out where the grocery store is. You know, the things that are important for your daily life. When it comes to medical care, people are so willing to just outsource that completely, not be the captain of their own ship, as you’re saying.

Yeah, absolutely. Yeah. And you know, one other thing that you bring to mind with that conversation is that, yes, part of that may be their expectation with things medical versus things, house management wise. Right. But also, even if they had that expectation of I want a physician that I really get along with, that I bonded with that, that I know is going to take good care of me. That having that expectation, but having the physician shortage that we have now, somebody moves to Flint, Michigan, and wants that in an otolaryngologist or even a pediatrician or anything in between. They’re going to struggle to find anybody, let alone somebody that that creates that relationship. That’s the physician shortage consequence. And so it’s something that as much as a patient, we should encourage them to be the captain. We also need to create a system that that benefits that captain.

Let me shift a little bit back to you. You know, when we spoke last time, Bobby, before the operation, you made this comment that as a Spock like person, your own description, that the only time that you thought you might cry was after the operation, when you realized that you could speak.

Yeah. Yeah. You know, what’s interesting is that I’m sure that that was on my mind. I don’t remember that, but. But now, even weeks after surgery, the final pathology came back as grade two cancer, which is fantastic because now the life expectancy is 10 to 20 years and it could be longer. Took a few weeks to get it, but we weren’t rushing it. And so here I am, having thoughts about what I would do in my limited time if that was just a year or two. But now having up to two decades to do the same work is really inspiring.

It is still kind of meta for me to hear you speak this way, and I and I think anybody listening, maybe you’re a young guy. I’m a little bit older than you, I’m two or three years older than you. I, I have not gotten to the point in life yet where I think about mortality. And my guess is that prior to this, you really didn’t think about it either.

You know, actually, I, I guess I would, I would say that a little differently and that I did think about the end of life, even before I even thought that that applied to me. So my parents, they moved here from India, I think, as yours did. And I remember going to Catholic school Monday through Friday and then going to the Hindu temple for our classes on Sundays. And what I learned on those Sundays my entire life growing up is the purpose of the body versus the soul. And what happens to that? Right. And so the purpose of the body is to help us do our work in this lifetime. And when it ends, it ends. And not to be attached to this body. Right. And that’s something that I believe. And so doing the work, taking care of patients, raising my kids, helping in my community, that was my responsibility. If I did it until I was 53, then was diagnosed with a brain tumor and was dead by 54. So be it. And I tell you how wonderful it is to have had that thought. Then get a diagnosis and apply that thought right. And that’s not easy.

Yeah. You know, it’s one thing to grow up learning these things. And I attended the same temple. You know, we may have been there at the same time from time to time.

Yeah.

But I but I think your point about what you learn and whether or not you’re able to actually put those lessons into practice. Many of us aren’t ever challenged that way in our lives. Yeah. You were you were challenged and you were able to to uphold those lessons. I don’t know that I could have done it, to be quite honest. Maybe I, I guess I hope I’m not challenged in this way, but I really admire how evolved your thinking was from the get go.

Well, thank thanks, Sanjay. I mean, it is it’s certainly helpful also, just because in the hours that I had to think and plan for this operation on December 13th, if my focus was based on fear of, you know, how could this happen to me. As opposed to just the logistics of teaching my wife how to look at the bank account, determine how to pay our power bill and how to do this and how to do this management of life. The fact that I had all that time to help my family as opposed to drowning in the sorrow of why is this happening to me and my body, that lack of attachment created so much time to take care of these other things that it was wonderful.

There’s so many insights here, Bobby, I mean from the operation itself, picking doctors, this what you’re describing. Nothing is easy and nothing is straightforward. There’s this nuance to everything and I think that sometimes it can feel very isolating, very lonely when you’re going through something like this. And to just be able to, whether it’s listening to a podcast like this from you and hearing your experience, I think that can be very anxiety relieving.

Yeah Imean I think encouraging of asking questions right. If you know that other people have this, have done this or gone through this, I think being aware that you can ask them that. Because that’s what I did. And when people found out I had brain cancer, I had a dozen emails that came through saying I had a glioma also, and this is what I did. And this is what I experienced. And I think that’s the importance of communication via products like yours.