EP. 27: FACING THE RAREST OF CANCERS

WITH KATIE COLEMAN

Sep 7

WITH KATIE COLEMAN

A patient shares her journey facing an incredibly rare kidney cancer, and lessons learned on hope, fear, and joy.

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Episode Summary

On New Year's Eve of 2020, at the age of 29, Katie Coleman was diagnosed with metastatic renal oncocytoma, a type of kidney cancer so rare that she is the only known case in the United States and one of only a handful around the world. The sheer uniqueness of her case resulted in a prolonged course of prognostic and therapeutic uncertainty. Thanks to the work of oncologists at the National Cancer Institute and MD Anderson Cancer Center, Katie is now in remission. Today, she's a patient advocate who passionately supports other patients through their cancer journeys. In this episode, Katie joins us to share her incredible story, her experiences with grief, uncertainty, and hope, and her lessons learned on finding joy and meaning in life.

In this episode, you will hear about:
• Katie’s backstory and the events leading up to her diagnosis - 1:50
• The experience of being diagnosed with one of the rarest cancers in the world - 3:58
• How Katie’s oncologists discussed this unusual diagnosis with her - 10:42
• The experience of receiving treatment with the goal of prolonging life, rather than curing the disease - 13:06
• How co-host Dr. Tyler Johnson communicates issues around serious illness with his patients - 15:38
• How the uncertainty around a terminal cancer prognosis impacts the way patients approach living their lives - 22:21
• How Katie’s changing prognoses have altered her life plans - 28:53
• The wisdom on living well one gains from facing a life-limiting illness - 34:32
• Lessons about hope in the face of uncertainty - 39:55
• The various ways clinicians can open up and connect with their patients on a human level - 44:14
Henry Bair: [00:00:01] Hi. I'm Henry Bair.
Tyler Johnson: [00:00:03] 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 health care 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 health care, from doctors and nurses to patients and health care 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: [00:01:03] On New Year's Eve of 2020, at the age of 29, Katie Coleman was diagnosed with stage four kidney cancer, forever changing the course of her life. Katie has metastatic oncocytoma, a cancer so rare that she's the only known case in the United States and one of only a handful around the world. Today, she's a patient advocate who passionately supports other patients through their cancer journeys. In this episode, Katie joins us to share her incredible and unique story, her experiences with grief, uncertainty and hope, and her lessons learned on finding joy and meaning in life. Katie, welcome to the show and thanks for being with us.
Katie Coleman: [00:01:40] Yeah, I appreciate the opportunity to talk to you guys.
Henry Bair: [00:01:42] To set the stage for our audience. Can you share a little bit about your back story and the events leading up to your diagnosis?
Katie Coleman: [00:01:50] So I will try to be brief with my back story. I'm still working on that since it took me a while to get diagnosed. But basically I was diagnosed with a stage four kidney cancer at 29 years old. I was a newlywed. I just got married about two months prior and we found I had about a 12 centimeter tumor on my right kidney and several lesions in my liver when I was diagnosed. And we found those in the E.R.. I've been feeling off and been kind of tracking down different symptoms and trying to get answers for things for about a year and a half prior to that kept going to different doctors and everybody kind of just thought it was anxiety causing the majority of my symptoms. And my husband and I were building a new house as we were planning on having children and I was trying to find a new primary care doctor in the area that we were going to be moving to. I brought up all the things that I normally had been bringing up, of the things I'd been feeling off about. And then this time I also started to feel a hardness in my upper right abdomen that I brought to their attention. And it was kind of just brushed off and told I it wasn't anything that I probably needed to be concerned about right then, and it just didn't sit right with me.
Katie Coleman: [00:03:02] So I kind of feeling it for the next few days. And when I realized that it wasn't going away, I went to an urgent care instead asked them about it because at the time I thought maybe it could have been a large liver. Whatever path Dr. Google took me down at the time I went to an urgent care. They felt it there and thought it was possible. It could have been an enlarged liver. It was a nurse practitioner that had felt it and he let me know. I could either go back to my primary care physician that I had just seen earlier that day, or I could go to the E.R. and it was kind of peak COVID at the time. It was December 2020. It was New Year's Eve, actually. So it was a very busy time and I was super worried about going to the ER over something that I thought was nothing. But they assured me that it was something perfectly reasonable to go get checked out in the E.R. So I went and got checked out and that's when they found the tumor.
Tyler Johnson: [00:03:57] It's a little bit funny. So I'm a cancer doctor, as many of our listeners, and you, you know. But one thing that is a little bit strange about being a cancer doctor is that the one thing I never, ever, ever do is deliver to a person the news that they have cancer, because that's like you literally can't have an appointment at our clinic. It's just a rule at Stanford that you can't have an appointment there unless it's already been biopsy proven. Having said that, I have certainly had the sort of the second discussion beyond that many times. And I'm wondering if you can just talk us through right here. You are a newlywed. It's literally New Year's Eve. You should be somewhere, whatever, counting down the minutes till the ball drops in New York or whatever you would be doing normally. And instead, you're in some emergency room filled with patients who are worried they have COVID. The doctors are now taking your symptoms more seriously. And now here you are in the emergency room, and some doctor who you've presumably never met before comes in and tells you that you actually have a mass on your kidney. Can you just walk us through as a 29 year old theretofore very healthy newlywed, what was that moment like?
Katie Coleman: [00:05:04] Yeah. So this is something that like I think back on a lot because it's not what I would have expected. Like when I heard of people getting diagnosed with cancer, like the reaction I had was not what I ever really envisioned. I think it happened for a number of reasons. But part of that is because I felt like something was off for so long and I had mentioned in multiple doctor's offices, I had asked like, I mean, I was very naive about anything medically related. I did not know anything about medical system, probably not really anything about my body. And so I had gone into several appointments before and felt like, hey, like something's wrong. And I feel like my body is trying to signal me. Like, could it be cancer? And I'd had several doctors even tell me, like, No, you're too young for cancer. It's just probably anxiety. And then, like, we'd follow down the path of like trying to rule out anxiety. So, like, I felt very unheard for a while and I understand why all of that happened, looking back at kind of everything that happened in those appointments. Are there things that I wish probably could have happened differently? Of course, but I understand how it took me so long to be diagnosed. But when I got that news in the ah, because I had like deep down felt like something was wrong, it's like mind blowing. I even think of like the day before I went to the urgent care, I was on the phone with my mom and I mean, of course, Dr. Google took me down half this road, but I said on the phone to my mom or something along the lines of like, I think it's too late.
Katie Coleman: [00:06:32] Like, I'm worried that it's too late and it's already gone to my liver. Like I specifically said, I thought I had tumors in my liver, which is like mind blowing for me to think back on because I didn't know obviously what I had at that point. But when I was in the ER and I actually got the diagnosis and I know it wasn't like biopsy proven or anything like that, but we are pretty certain based on the size of the mass and the number of tumors in my liver that it was stage four kidney cancer. At that point, I felt relief for the first time, which is an insane feeling that I never thought I would have ever felt. My husband instantly started crying and I felt like a moment of relief because I had somebody sitting across from me that actually, like. Believed me and like we had answers for part of maybe why I was feeling off and like I felt like, okay, I have a whole team of doctors that are going to be on my side at this point. Like we have a path forward. We know what we're going against now. It's like, I guess the devil that you know is better than the one you don't. And it wasn't just me feeling like a hypochondriac and constantly questioning my own symptoms and how I was feeling. So I felt weirdly validating, but it also was petrifying at the same time. I mean, I was a newlywed. I was planning on having a family. Like all those dreams were completely crushed in that moment. But yeah, there was this weird sense of like comfort.
Tyler Johnson: [00:07:56] For our listeners benefit. Can you then walk us through so you're in the emergency department, you have this sort of life changing news and then what happens next?
Katie Coleman: [00:08:06] We found out in the ER. And then because it was New Year's Eve and the holidays, everything, of course, was backed up. So it took me a couple of weeks to get into my oncologist and then a couple of weeks to get additional scans. So we did an MRI both on my brain and then my abdomen, and then we also did a biopsy. And I actually had a complication during my biopsy. I had a small bleed for my liver. And then so that led to a very short and patient just waiting for that bleeding to stop. Basically because of what I had was extremely rare. I have what's called a metastatic tumor, which the diagnosis itself is a bit controversial among some people, because Uncle Tom is are basically a tumor that can grow on your kidney. And they are always benign, except in my case, which obviously did not catch the memo. So all my scans in the E.R., because they tell us, have what's called a central scar. And the way I like to describe that to people is exactly how I pictured it. The first time I saw my tumor is like it looks like an asteroid hit it. Like if you look at the moon, you look at like the craters on the moon or something like that. That's what it looks like to me. There are other tumors that can have it, but mostly when you see that, you see that in comas.
Katie Coleman: [00:09:22] And so when we did the biopsy, we did the biopsy of both my liver and my kidney thinking, okay, if this was an on site tumor, there was a chance that maybe those lesions in my liver were just benign. We could just take the kidney out and then I would have a cancer diagnosis. And so once we did get the biopsy back, it did match what would have matched anonymous tumor, both in the liver and the kidney. And I cannot thank my pathologist enough because he wrote very, very, very detailed comments and information about that. It couldn't be more conclusive. But he gave all of the staining and everything that he did during that. And it was because I had the opportunity to read that report myself. I understood how rare my case was. And so I kept pursuing second opinions and other treatment options that ultimately led me down kind of a different treatment path, like six months later down the road. But my path followed with a lot of other patients did as far as like the diagnostic, after you get a scan or something like that, you're getting biopsies and going through that process to find out what exactly you have. But I probably diverge a little bit there, just due to how rare the type of cancer I had was, and there was lots of second opinions and everything like that after that.
Tyler Johnson: [00:10:42] So I often have to explain to our patients that, especially at the beginning of a cancer diagnosis, there's often a period of what can sometimes take at least weeks, if not months of information gathering, right? Even more so if you have a very rare cancer and you have to get referred around to this and that specialist and get second and third opinions and all the rest. But once all of that was finished and all the dust had settled and you had whatever degree of consensus you could have from the people who are taking care of you, what did they explain to you? Was the outlook like what was going to happen and what did the next however long look like?
Katie Coleman: [00:11:17] Yeah, so even that was a complicated question in my case specifically because the dust didn't really ever settle until like maybe six months in. But the first time the dust settled was after I had gone to India, Anderson, for a second opinion, and my husband and I actually moved down to Texas to be closer to MD Anderson.
Tyler Johnson: [00:11:36] The right answer was Stanford, just for the record.
Katie Coleman: [00:11:38] But right.
Tyler Johnson: [00:11:39] I think MD Anderson is a close second.
Katie Coleman: [00:11:41] Right? I actually feel like that was one of the places I looked. But I personally love Austin, Texas, so I was also slightly biased to wanting to live in Austin. When I first went down to MD Anderson, they didn't know what it was for sure either. We did lots of additional testing and waiting for like NGS reports and everything like that to come back. And then basically they let me know that what I had was very rare and that obviously there's no like approved treatment specifically for my type. And so we were making kind of like educated guesses almost on treatments that we thought I'd respond to based on like the response of some other tumor types that were similar. And so I was put on Cabometyx, which is a TKI or often called like in, especially in the patient community, like chemo pills. I was on that for a couple of months, but at the beginning and during that time, the initial time kind of after the dust settled, I guess is treatment was just a prolonged my life. Surgery wasn't an option. I was inoperable. I'd had lots and lots of people tell me I was inoperable. The goal was basically just to prolong my life as long as possible. But we weren't for sure if I was going to respond to any of the treatments, obviously, because they were not made for my tumor type. So I'm very grateful. I actually did respond to that first treatment, which I feel very fortunate for. But yeah, it was kind of like the first death settling, I guess.
Henry Bair: [00:13:06] You mentioned that the goal, at least from the clinicians who took care of you, the goal for them was to help you live as long as possible. So before the results came back that fortunately the tumor was responding to the chemotherapy. How did you think about the idea that what your doctors were trying to do was to help you live as long as possible and not knowing whether this was ever going to go away? How did you grapple with that?
Katie Coleman: [00:13:31] Yeah, that's such a great question. And that's actually something that like, I talk a lot. About now, and I've kind of become a patient advocate just from sharing my story and talking with so many other patients. And it's something I think about a lot because the more I've learned not only about my diagnosis, but just about cancer in general, the more. My mindset, I think, has shifted from those early days when I was first diagnosed. There's so much like I didn't know a whole lot about cancer beforehand. I was very fortunate. Not very many people in my family have struggled with cancer. My mom did have stage one breast cancer, but she's been in remission for, I think like seven years and done really well. And outside of that, I didn't really have exposure to anybody that really had cancer. So a lot of my ideas of what it was like was framed by movies and media and all the context that gets pulled in there. And so in my mind, all I heard was like, fight, like you've got to fight the cancer and the battle that comes along with it. And I remember back to that time when my doctors first told me that treatment was like our treatment goal wasn't curative.
Katie Coleman: [00:14:40] It was just the prolong my life as long as possible. They told me those words, but that did not translate in my mind like I in my mind was still thinking about, okay, well, I can be on this medication like people have been cured before, like maybe I can be cured even though I knew that, like especially looking back on those conversations now like I know this treatment was never meant to be curative and like especially the extent of disease, I had no it would not have happened. But just like what I was conditioned to think and believe was just that like that was my goal was to be cured and I didn't realize I'm out of place now that I realize that like you want to be cured to live life and continue on. Like it's, it's perfectly like stable is an amazing place to be. I'm in a stable state right now, but that was not something that was even remotely on my radar before. And at the time I was initially diagnosed.
Tyler Johnson: [00:15:38] I have to say, I remember very distinctly one of the most memorable patients I've taken care of as a cancer doctor was a woman who was diagnosed with metastatic stomach cancer when she was 19 years old. So she was on the border of almost needing a pediatric oncologist, but because it was sort of a quote unquote adult cancer, then we ended up taking care of her. And the thing that was so strange about it was that she actually had had pretty mild symptoms that led to her diagnosis. And so many people with stomach cancer have a terrible time eating or they've lost a lot of weight or they you know, they have sort of very telling signs and symptoms. But she had none of those. She had like some mild abdominal pain that just happened for whatever reason that she got a scan in the ED one night and one thing led to another and she got this diagnosis. And so the first time we met her as a doctor, I had this very strange experience of feeling like I knew that she was much sicker than she looked or she felt. And when I first met her, because many people with with metastatic stomach cancer only live for a matter of months. And I remember feeling this real tension inside of me because on the one hand, of course, I wanted her to fully enjoy however much time she had remaining as if she didn't even have cancer. But on the other hand, I felt this like responsibility to make sure that she understood that it was not going to last very long and that she was going to get sick really fast. And the first few times I saw her in clinic, I had this I felt this sort of weight on my shoulders that I had to impress upon her how serious this was, to the point that I remember talking to one of my mentors because I remember saying to my mentor, like, I keep telling her this and I feel like she just has no idea.
Tyler Johnson: [00:17:26] She's just like living her life and whatever. But then over the course of the next years, she, like, went back to college and entered a beauty pageant and like went and had a boyfriend. And I mean, like, all of these things that in my mind, there was still this part of me that was like, No, you don't understand. You're really, really sick. But the thing was that she was I mean, she didn't feel sick. She didn't even know she was sick. And for whatever reason, the chemo had no side effects for her. And so for like three, three and a half years after I met her, which is an extraordinarily long amount of time for somebody with that diagnosis, she just acted for all the world as if she didn't have cancer. Like if you came to our waiting room and saw ten people there, one of whom had cancer and the one was her, you wouldn't have been able to pick her out of the lineup. Right. And so I don't even know what the question is here, except I'm just reflecting back to you as the doctor that this is a very I still don't really know exactly what the right answer there is. So I guess I'm just asking if you have any thoughts in response to that. And having now heard a fumbling, bumbling doctor talking about what it's like on my side.
Katie Coleman: [00:18:29] Yeah, I actually have so many thoughts on this. Like, I don't even know if, like, I'm going to just like fumble my way through on the other side too, because I don't know that there is a solid answer to this. So for example, last night I actually ended up on the CBS News and whenever anybody asked me about my prognosis or anything about my disease in that regard. What I have is so rare, we're honestly, like, guessing, like we can't really know. And so I always preface that and kind of let people know that, yes, my prognosis has changed or we think it's changed, but we're kind of guessing and I'm hopeful. And if I'm really pressed on that, like sometimes I'll repeat some things that have been said by my doctors. Like we're hopeful that I might have like a long life or like things like that, but I understand them in the context of the appointment that I have with them. I know that we are all guessing at this, but when that piece aired, that whole context behind we're all guessing got clipped out. And so all you hear me me saying is maybe I'll have a long, full life ahead of me. And like, that's a big ask for somebody with stage four cancer. Like, I'm aware of that. But I think it's like I've had conflicting feelings on that because. On the one hand, being a patient like it's very, very, very important for me, for my doctors to be honest with me.
Katie Coleman: [00:19:49] I'm somebody that like, I'm a realist. I live my life and I, like, take advantage of the fact that I feel so well right now in a lot of the ways that you kind of describe that that patient does. But I am very much a realist. I know that like things can change on any scan and I want that context. And that was the context that I was really, really searching for early in my diagnosis. Like, I had moved down to Texas for MD Anderson and I wanted to know how I live my life. If I have six months left to live versus how I live my life, if I have years left to live are very different. One of those like I move back home next to family so that I can be prepared for hospice if that needs to enter the picture. And I have different priorities, whereas if I have a couple of years, then I might have different things that I want to do with my life. And so. I was always searching for that context, and that's not something that I can really gather with my diagnosis. So it's hard because I always wanted to be told that I still to this day wish that I could be told that, but nobody has a crystal ball. But at the same time, I also realized that early in my diagnosis, I was very hung up on prognosis and the idea of being cured or being cancer free.
Katie Coleman: [00:21:07] And those words have completely changed for me. A lot of that is because I've had a lot of patients that I've become friends with. I've seen how quickly things can turn. And I realize, like, I feel amazing right now and that's what I need to live in and take advantage of. I don't know if I if I was given like Dr. Google, for example, had told me I had probably 18 months to live based on the extent of disease that I had had and ligaments and just general prognosis. I'm now past 18 months and I feel the best I've felt my entire life. There was a point in time that I really held on to that number and it made it so that I didn't get out of bed. I didn't live my life. I didn't do anything. And then there's the point where I'm at now, where I have a new job. I'm a software engineer. I'm building apps on the side. It's really tough because the prognosis specifically can carry such a weight and have such an impact on somebody that it can literally change the way you live your life. But as a patient myself, at the same time, like if my doctors knew I was sick and knew that I had probably like 3 to 6 months left, I would never want them to keep that information from me.
Henry Bair: [00:22:21] Katie, it's interesting that you noted that your approach to living your life would have looked very different depending on if your doctors had told you that you had six months versus one year versus two years left. So, Tyler, I have a question for you. When you are talking to your patients with cancer about how much time you expect them to have left, the range can often be quite wide for any given cancer from months to years. How do you approach that conversation, knowing that what you say can profoundly change how they live their lives?
Tyler Johnson: [00:23:01] It's a really tough question that we that we grapple with a lot. So the first thing to recognize is just that it is true, Katie, that you're just in an unusual situation, not unique by any means, but unusual. Right. It is true that most people who are diagnosed with especially metastatic cancer are not young. Right. They're not newlyweds. They're not just barely thinking about starting their families, which is just to say that I think even for somebody in their fifties and sixties, it's not to say that they don't have big decisions to make in their life, but it's not quite the same thing. Right. It's not like you're getting ready to establish a career in a family and have children and buy your dream house and all that kind of stuff. And so for many of our patients, the spectrum of decision making just isn't the same as it is for a young patient. So that's the number one thing. Number two, is that the situation that many patients, including some younger patients face, is more of a yes or no proposition, right? So if Katie or someone in similar circumstances, we're in a place where the cancer could be removed, then it's a very different thing. Right, because it's then you're in a situation where you hope that the cancer is all gone, but you have to acknowledge that it could come back in the future and that it has sort of a separate way of thinking about it. But for someone who is in your situation where we know that there is disease that can't be cured and where what we're dealing with is the possible outcomes in terms of how long you'll live.
Tyler Johnson: [00:24:24] Basically, what I tell my patients, I'm actually very insistent on never giving numbers, especially in my first visits. If really pressed, I will give a range, but the range is often borders on not being helpful at all because the range might be something like like even for one of our toughest cancers, pancreas cancer. If I'm honest, the range is days to six years, right? The patient I have who has had metastatic pancreas cancer for the longest and is still alive and doing great is six years out. I mean, that spectrum is so big as to be practically unhelpful. Right. And so what I usually tell patients, though, is that the spectrum remains wide until a person nears the end of their life. And then it narrows significantly in a different way of saying that is that when one of my patients is coming close to the end of their life, I can usually tell that the end of their life is drawing near and I make them a promise the first time I see them, that when I gather that that is now the case, I will tell them that in so many words. And then in the meantime, really, all we can do, as trite as it sounds, is to take things one step at a time, because there are some people who you give them a chemo treatment and like Katie, they feel fantastic. They have no side effects and the cancer responds beautifully. And then there are other people who get the chemo and have either terrible side effects and end up in the hospital or whatever, or the chemo doesn't work at all. And unfortunately, we just have no way of predicting where someone's going to be on that spectrum before they actually receive treatment.
Tyler Johnson: [00:26:02] And so all we can really do is talk about the spectrum of possibilities and then tell them that we will be candid with them as we work our way through together with them. What's going on. But I do have to ask, though, then, Katie, given that and given that you are right in what some people have sometimes referred to as the decade of decision, I don't know exactly how old you are, but anyway, somewhere in that place where you're thinking about establishing a home and a family and a career and everything else, I mean, what I think I hear you saying was that initially your inclination was to just kind of throw up your hands and say, well, however long it's going to be, it's not going to be that long. So I'm just going to hide in my bed and not engage in any of the long term stuff that I otherwise would have done. But that over time, you've kind of crawled back out of your bed and said, Well, here I am and I feel great, and so I'm going to pursue life as if I didn't have this diagnosis, even though I know that I do. Can you talk to us a little bit about both, what that process of crawling out of the bed, so to speak, what that's been like and how far does that extend? Are there still things that you places you just won't go because they seem to require too far, too long term of planning or how do you think about that?
Katie Coleman: [00:27:15] Yeah, so that's a great question. And as we were talking here, I realized that I probably left A pretty big piece of context here. So I basically I was inoperable initially and I was put on treatment just to prolong my life. But I never stopped looking for answers because I knew what I had was really rare. So it took about six months for me to get to surgery, but I did eventually make it to the National Cancer Institute or the NCI, and they did end up operating. We removed my right kidney, did several liver wedge resections, cut chunks of my liver out. And we did several ablations in that procedure. And then last November we also went back and did additional ablations. There are a few spots that are left in my liver and I'm just currently on active surveillance, so I'm not on any treatment at all right now. And they've been stable for at least six months on active surveillance. So we're not currently doing anything until something changes with those. So I probably left out that context, which explains a lot of why I feel the way that I do right now and why I feel so well.
Tyler Johnson: [00:28:22] I was going to ask you earlier if they had decided to revise their decision about not doing surgery. But I didn't want to jump into like a real time actual medical consult while we were recording the podcast, but I'm glad that they did that.
Katie Coleman: [00:28:34] Yeah, it was like a very, very difficult process. I actually had to change oncologist during part of that process. Like I was going to MD Anderson. I got my surgery at the NCI, so and then MD Anderson did finally open up the door for surgery once I had switched oncologists, but the whole thing there was surgery and everything like that.
Tyler Johnson: [00:28:53] Okay, so now you're in this very different place, right? So you've had surgery, you've had multiple ablations, you've gone from a place where you have a big primary tumor and lots of tumor spots in your liver to a place where you have no primary tumor and only a couple of remaining spots in your liver. So I can certainly understand how that would change your your framework. But I guess then my question is, does that still only extend so far? Like, are there still long term plans that you're not willing to engage in? Or do you feel like now you've just kind of thrown off the whole thing and you're just going to engage in your life? Is this as if this had never happened?
Katie Coleman: [00:29:29] Yeah. So kind of going back to like the original time because it did take it took me six months to get the surgery. And the surgery definitely changed my outlook a lot, but my outlook started to shift before that. Probably the biggest shift happened for me, happened from a conversation with another patient that actually just passed a couple of months ago. But I was desperate for information. When I first got diagnosed, I felt like I could not pull the right information out of my doctors. I wanted that context of like. I'm like, I was clueless. I had no idea. Like, am I going to die? In a couple of days? I felt constantly on edge because in my mind I didn't know if I was going to die in a couple of days. I didn't know what having stage four cancer meant or if it was going to be a couple of years. And so, like, that's what left me in that like complete state of despair and like not being able to function at all. Because I had gone from literally planning my life out with my husband two weeks before building our house and like planning out the rooms for our children to like the spot. The I don't even know if I'm going to be here next week kind of thing. And it was in that process I was searching through hashtags on Instagram like stage for kidney cancer hashtags, and I ended up connecting with a patient in the UK.
Katie Coleman: [00:30:45] And I remember I just asked him, I was like, How you seem like you're living your life, like how do you go on living your life? How do you be so positive? And he responded in voice memos back to me. And I remember he said to me, like, your life isn't over. Like it's not like I know you feel like your life is over right now, but he's like, you have so much life left to live. And he shared with me that he was like four years into his diagnosis and he's not doing as well as he once was, but that he felt the same way that I did in that moment when he first got diagnosed and he had kind of given up on everything. But then he realized that there's been all this time between when he was diagnosed and where he was at then and just that. He was wasting a lot of his time worrying at the beginning and not living and. Then just he learned that time kind of just goes on. And so he started going on with life. I don't know. There was something about the way he delivered those messages that really drove home to me, like, okay, it's not is the first time I got context of like, I might not die tomorrow because this guy is still alive four years later, so it's possible to still be alive four years later.
Katie Coleman: [00:31:55] And that was what was missing. I think in some of the context of my appointments, there were some ranges given, but it was really difficult to try to. Get that concept of like am I dealing with months here my dealing with years here. Like, what are we dealing with? And so that shifted my perspective a little bit from the beginning. And then I connected more and more with other patients, and that just shifted my mindset. But there are certain things like. To give two examples. So I recently switched jobs. I was at a company for eight years. My employer was amazing with my diagnosis and I was terrified to make a move to a new company. But I really wanted to switch and use my software development skills and more of the health care space. And so I had scans coming up and I asked my doctors like, but we don't know in my case. And I pester them with that annoying question every single time, like where where are we at here? And kind of trying to gauge. Like there's I've been told a number of times, like kind of live three months at a time and like just go out, live your life for the next three months. But living your life is like an early 30 year old. I'm 31 is very different. Like if I were to go live my life, I'd be like having kids or building a house.
Katie Coleman: [00:33:15] Like, I can't do that. And so trying to understand that context, I in that appointment remember asking them like, I'm about to take a new job. Like, Is this a smart decision? Is this not a smart decision like. If I only have three more months or if like the next three months, I'm all of a sudden going to be on hospice. I'm not going to go take this new job. I it's not a route that I want to explore, but if I have more time, then I obviously will. So there's that direct feedback that I've even had with my oncologist, my doctors in general. But then just yesterday I had a meeting with one of my bosses and we were talking about career goals, and I was in that place of thinking like, okay, well, my ambitions, if I had no cancer, sure, I want to be like a VP of engineering or like I was trying to think more back to those long term goals that I used to have. And I very conflicting emotions on those things. Like I want to shoot towards that because I'm a very ambitious person that's just like my natural personality. But then there is that side of me that's like, All right, well, that's a little ambitious, Katie. You sure you want sure you want to go there? There's a little bit of guilt that even comes with having those thoughts and exploring those ideas sometimes, too.
Tyler Johnson: [00:34:32] Can I ask one last question on this thread, and then I should let Henry ask some questions. But so there was a story that I read a long time ago about a --and there's a word for the thought transformation that I'm going to describe, which I have been, I misplaced the essay and I can't figure out the word anymore, Henry is smarter than I am, so maybe he'll know what it is-- But the but there's this story about this man who goes to the doctor and the and is having abdominal pain. The doctor does a scan and finds that he has a spot on his pancreas. And so he goes through a number of tests and the and the doctor calls him back a week later after he's had a biopsy and says, oh, my gosh, I'm so sorry, this is pancreas cancer. You only have months to live. And so the man is just struck to his core by this news and goes home and thinks about his entire schema for his life. Right. And says, oh, my gosh, like, what have I been doing? Like, what do I need to do? What really matters to me? What about these plans? Anyway, it goes to this whole thing. Then a week later, the doctor calls him back another time and says, Oh my gosh, I'm so sorry. But your biopsy got mixed up with another biopsy. And it turns out that your your spot on the pancreas is just a benign mass that has no malignant potential. And it turns out you're actually fine.
Tyler Johnson: [00:36:02] So as you were, you can go back to your former life. This is not anything to worry about. So now the poor patient has to go home another time and think to myself, Oh, my gosh. Now what do I make of this, like, epiphany that I had when I thought I only had months to live? What do I do with that in the face of now having my entire life to live? Now, your situation is not quite that dramatic, right? In a sense, it's not as if you don't actually, you know, as if you've never had cancer. But because the diagnosis is so rare, it sounds like you have been you have gone from a place where they were more or less telling you or at least sort of telegraphing to you, even if they never said the words that your time is very, very limited to a place where now it's kind of like, well, gosh, you know, you've had surgery and ablations and most of the disease is gone and you're only on active surveillance. And who knows, maybe this will go well for a long time, right? So I guess I tell that story all by way of asking this question. Now that it seems like your prognosis is better than you initially expected and you're readjusting your life to this different and more hopeful set of expectations. What wisdom do you still carry with you that you only could have gained because of the time you spent thinking that what remained of your life was very short?
Katie Coleman: [00:37:27] Yeah. So there's probably two, two main takeaways that I have here. And one of them is not what I would have expected, but I think it kind of plays to that exact scenario that you talked about. But so I'd say the biggest thing that I have changed in my life is, I mean, my entire life has changed. I'm a completely. Anybody that knew me before my diagnosis, like the fact that I'm on a podcast right now, people would think was insane. Like, I'm usually the biggest introvert. I'm quite shy by nature and like, my entire life has completely changed. But the biggest takeaway I had is like before my diagnosis, I spent all of my time sacrificing the now for the payoff of later. I was like working really hard. I was trying to climb the ladder. I was doing all of the things so I could set up my life and I could really enjoy it in my thirties, forties and fifties. And then when I retired, I don't do that so much anymore. I do to a certain extent. Like I still make sure that I line myself up so that I can enjoy life. But I enjoy the here and now. I realize like how lucky I am to feel as well as I do in the moment. And I really. Hold on to that and kind of just let it ride.
Katie Coleman: [00:38:45] One of the things that stands out to me the most is so because I had that really big tumor. Like sometimes when I run, I'd get like some abdominal cramps. Not really quite sure what it was like. I have a bleeding disorder too, so maybe I don't know if it's possible. The tumor was bleeding at some point, but it was also uncomfortable. I had some heart rate and blood pressure issues, so like I couldn't really run. I got to a point where I had to stop running and then after surgery, like I had just accepted, I probably was never going to run again in my life. And after surgery. And once I had recovered to the point that I was able to run again, like feeling the wind on my face, like I cannot describe that to somebody. It was like one of the most magical experiences I have ever had. I appreciated the fact I was out of breath, like and I think that's the biggest shift is like I will go through my day to day life and even like things that are like, frustrating. I just have this appreciation of like, I literally cannot believe I get to experience this. Like, it's such a shift in perspective because I feel lucky. Like, I feel like I was given this gift.
Henry Bair: [00:39:55] Over the course of this conversation, you have been so open about your experiences, and we want to thank you for that. I would love to ask you about the role of hope in your story. You talk a lot about struggling with uncertainty, uncertainty with how much time you had left, uncertainty with the course of treatment. What lessons have you learned about hope in the context of such uncertainty?
Katie Coleman: [00:40:27] Yeah, I don't know. I think that's a great question. I think it kind of goes back to kind of what we were talking about at the beginning when I was sitting in my oncologist office and they told me that the treatment that I was on was not meant to cure me, it was meant to prolong my life. Yet in my mind, I was still like, Cool, I'm going to shoot for the cure. There's a lot of hope tied up in that exact experience. And I have mixed feelings about it because on one hand, like. It's not realistic. Like I wasn't in a realistic place for thinking that in my particular situation. But at the same time, it it gave me a lot of hope. And this is something that I struggle with a lot, because I know my case is very, very, very rare. My situation is very rare. And a lot of other patients don't have the opportunity to be where I am or in the situations that I have been in. And I have struggled with that at times of do I even share my story because am I hurting somebody else? Am I giving them hope that they can end up in the same place as me when we have very different diseases? And I think what I always come back to is so during that time when I was put on Cabo, there was one patient I knew that had actually been on Cabo and reached no evidence of disease.
Katie Coleman: [00:41:47] And since then they had come off of treatment and been off treatment for a couple of years. I knew we had very different tumor biology and diseases, but that did not stop me from looking at her for hope and like almost looking that at that of like, okay, that's what I want to be. That's what's going to keep me going. Like, I just want to get to that. I think that that's important. And I think that's where I've struggled of like do I have guilt sometimes on like, I know it, not everybody's going to end up in my shoes, but at the same time, I know that I needed that when I was in that place. Like, I needed somebody to look to, to have hope because. Without that, like just so much changes about your mindset, the choices you make and everything that you have going forward.
Tyler Johnson: [00:42:40] Can I ask you, Katie, would your view on so you find this one patient who you sort of hold on to right as the OC, but it happened once so it could happen again. What would your view on the how much you value knowing about that patient change if your tumor biology had been different? Like what if your tumor biology had proven to be really aggressive and nothing had really worked? Would you still want to want to have been offered that hope if if things had turned out differently?
Katie Coleman: [00:43:09] I don't know. This is something that I think about a lot. I don't know. It's that sense of like hope. Like I did respond to Gabo, but if I had not responded to Cabo, I think I still would have held on to that. Like, just the idea that somebody had a response just gives you the hope of like, it's not impossible. If I had something extremely aggressive like that. That's one of the things that I really struggle with even personally is because, like, I know I have people who follow my story that have very aggressive disease and I realize like how drastically different our cancers are. And it's really hard for me of like, I don't want to mislead that person, but at the same time, like I don't want to take away their hope because, like, that's something that I needed and. Even when I had finally grasped the idea that treatment was not curative for me before surgery, that was something that I still held on to was that story.
Tyler Johnson: [00:44:14] So, Katie, you have been so incredibly generous with your time. As we're wrapping up, I wanted to ask many of the people who listen to our podcast are in various stages of training to be doctors, right. As I'm sure you know, like to become an oncologist, for example, as ten years after you've graduated from college. Right. Which is just to say that there can be people all on that spectrum for people who are up and coming as doctors, as somebody who has interacted with way more than your share of doctors for how old you are. What can you tell, especially those who are in training about what matters the most? Like to you as a patient? What are the dos or the don'ts that you have recognized really make the biggest difference?
Katie Coleman: [00:45:02] Yeah. So I can only speak to my experience, of course. And I think I'm even in my own category of, of patients in some regards in that realm. Like I'm, I like to be very involved in my case and the decisions made. But I think the biggest thing I would have to say is just listen. Like I spent a long time before I got diagnosed feeling like I was not being heard or listened to. And a lot of that I think came from. Them speaking first. And then it kind of felt like I was saying words, but they were just trigger bugs, words that were like zooming right by the actual conversation and not listening to like the context. And like everything that I was saying beyond just the initial like where they had already painted the discussion of where it was going to go. And so I think just listening intently. And then I'll share that. Like after I got diagnosed. Like the number one thing that I love and appreciate as a patient is when. My doctors are just humans. I just want to know that you recognize the situation that we're in and that like it's just a human interaction. One of the first times I shared with one of my doctors at the NCI like my back story of how I got diagnosed so that we could fit that in my workup. Like I watched her eyes like water, like I watched her like well up with tears and like try to suppress that emotion.
Katie Coleman: [00:46:32] And it was like a very brief moment, but that meant like an insane amount to me. And I realized that on the other side that might have felt like I don't know how that might have felt or been viewed from like a professional aspect. But I know for me as a patient, that meant more than anybody's ever said to me, because like that felt human. It felt like they understood the gravity of the situation. And the same thing has happened with before I was going through surgery, I had. Like my surgeon had mentioned, like a couple of times, like I was ridiculously terrified of surgery. And I remember one of them sitting in there and just like acknowledging that fact and being like, Hey, if this was me, I'd be scared to like or one of the fellows on the my surgery. I think we're fairly close in age. And I remember her like sitting on the edge of the bed and like saying the same thing of like, hey, like, I would be in your same shoes. I, as a patient, really, really appreciated that because it was the acknowledgment of I am validated in those feelings and as a patient it made me trust my physician so much more by being able to connect on that level.
Henry Bair: [00:47:44] That's really wonderful. I want to thank you again, Katie, for taking the time to join us, a conversation for sharing your story. I know that you are very active in in telling your story and the lessons you've learned through YouTube, through Twitter and other social media. So we will be sure to link all of those in their show notes to this episode.
Katie Coleman: [00:48:03] Thank you. I appreciate that. And it's been great chatting with you guys and I appreciate the opportunity to even have these discussions. So thank you.
Henry Bair: [00:48:12] 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 Doctors Art. If you enjoyed that episode, please subscribe, rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.
Tyler Johnson: [00:48:31] 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: [00:48:45] I'm Henry Bair.
Tyler Johnson: [00:48:46] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.