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Pediatrician Kelly Curtin-Hallinan discusses her article “My improbable survival of stage 4 cancer.” Kelly shares her year-long journey of facing a dire diagnosis, enduring rounds of tests, managing the anxiety of waiting for results, and ultimately experiencing an unexpected recovery with immunotherapy. She reflects on the skepticism she once held about miracle stories, the emotional toll of uncertainty, and the balance between fear and hope that defines living with cancer. Kelly also describes the strain of protecting her daughters from the harshest realities while carrying her own doubts about survival. Listeners will gain insight into the fragility of medical certainty, the emotional reality of stage 4 cancer, and the strength it takes to live fully even when the future is unclear.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Kelly Curtin-Hallinan. She’s a pediatrician, and today’s KevinMD article is “My improbable survival of stage 4 cancer.” Kelly, welcome to the show.

Kelly Curtin-Hallinan: Hi. Thanks for having me, Kevin.

Kevin Pho: Your article is a lot of your story, so for those that didn’t get a chance to read it, just tell us a little bit about yourself and your story.

Kelly Curtin-Hallinan: I am a general pediatrician living in South Central Pennsylvania, and about a year ago I had a very shocking and difficult-to-establish diagnosis of renal cell carcinoma. I have written a couple of articles about this; unfortunately, it was really difficult to get anybody to take any of my symptoms seriously.

I ended up getting admitted and was told I had stage four cancer, and then through a variety of workups that took many, many months, it has eventually been downgraded to stage three cancer. I’m happy to report the current plan is for me to finish treatment this month. On the advice of my oncologist, I’ve done some writing about my experience for catharsis to help me process it.

I also think as a physician, patient stories are really compelling and interesting to hear because when we see the patient, we only get a small sliver of their experience, both with the health care system as well as their own journey. I think it’s always really interesting to hear patient stories.

I originally had written these essays for myself for catharsis. I’ve spent the last year really staring down my own mortality, wondering how my children will know me if I die in short order. What will they know about my thoughts and those sorts of things? I also wanted to have some things in print to leave them because it originally did look like things were going that way. I’ve been processing the emotions of all of this, which led to three essays for your blog and, just recently, a children’s book with my daughter that addresses a lot of these issues.

I’ve been living in the duality of so much that I think people can really relate to: the duality of being both a patient and a doctor, of being a caregiver and being taken care of, of experiencing hope but also skepticism, and sort of living in that space in between where there are no guarantees and we don’t know what’s going to happen. I just wanted to share the story for myself and for others.

Kevin Pho: You said that you had symptoms where the initial medical team or clinicians didn’t take them seriously. What kind of symptoms did you initially have?

Kelly Curtin-Hallinan: For anyone with a weird diagnosis, it makes very little sense to me, even medically, but it’s just what happened. About four months before I was ultimately diagnosed with cancer, I started with radicular symptoms. At that time, it was noted that I had high blood pressure, which we thought was from pain. I had a workup for that, which was an MRI and treatments, and I did improve. It was all consistent with that, but my blood pressure kept going up.

Again, we still thought it was pain or related to that. They had put me on some Cymbalta for neuropathy and thought maybe that was the cause. Besides neck pain, I had hypertension that I previously hadn’t had, and middle-aged, premenopausal symptoms. I’m in my forties, so nothing was really out of bounds, and that made sense for quite a few months. I did wean off my Cymbalta, and then my blood pressure started being very crazy. I started going to the emergency room with blood pressures in the 200s over 180s. I did have some workup that, at least at the time, was believed to be negative: negative blood work and negative head and chest scans.

I think I was sent home twice from the emergency room with an anxiety diagnosis. The last time that I had gone, where I did ultimately get diagnosed, I really had to fight to get some scans. I’m not mad at anybody, but they weren’t nice. They told me anyone could see I was having a panic attack. Then, as it turned out, I had this enormous abdominal tumor. They went back and looked at my scans and found all these abnormalities, which is why they believed it was stage four.

It is just a wild sort of whiplash of going from “I’m fine, I’m overreacting” to “I went to the ICU and maybe I have terminal cancer.” I don’t think it gets a lot more dramatic than that. I don’t know that I’ve ever been involved in someone else’s patient experience like that, and I did really have to fight reasonably hard to be taken seriously.

Kevin Pho: What did you have to do when you said that you had to fight reasonably hard? How did you do that? Did you involve other colleagues or family members? What do you mean that you had to fight for these scans?

Kelly Curtin-Hallinan: I kept getting sent home. The last time I went to the emergency room, I had seen an extender, and I insisted on seeing the physician, who, gratefully, was the last person who I feel actually listened to me. I was having some abdominal pain, and they did ultimately scan my abdomen and find a ten-by-twelve tumor.

Once I got diagnosed and admitted, I talked to the team, asking, “Is there a way I could have advocated better for myself?” because I did really start believing that maybe I was having a psychological event. I couldn’t figure out what was going on. Again, I don’t think it makes the most medical sense. I’ve reviewed my chart so much; I can’t explain it to you, but that’s just what happened.

Additionally, they didn’t really want to admit me. I do work in utilization review, and I actually called the utilization review team that I work for and asked them to send the actual criteria for hypertensive emergency, which I certainly fit at that time. I had to ask for scans. I called my PCP in between; they couldn’t get me in. I tried all the channels that I know. I’m a pediatrician, so I thought, “Well, maybe I’m wrong. Maybe this isn’t a big deal to adult doctors.”

I do work with some adult doctors and told them my story, and they said, “No, that isn’t right.” It was a couple of weeks of reaching out to colleagues, calling medical facilities, and going to the emergency room. I’m always polite, but they did tell me, maybe a half an hour to an hour before I got diagnosed with this very large tumor, that everyone could see I was having a panic attack and that the emergency room isn’t really the place for that.

It was a frustrating experience, for sure. I am very calm now, but at the time, I was feeling very ill and confused. When I went into the emergency room and my blood pressure, which I checked at home, was that high, I did cry in triage. The response wasn’t sympathetic.

Kevin Pho: As a physician yourself, you would have a basic sense of what’s serious and what’s not. And yet you still encountered what sounds like being almost gaslighted or dismissed.

Kelly Curtin-Hallinan: I’ve heard these stories from patients, but I can honestly say I’m not sure that I believed them. I don’t think they were lying; I thought that maybe they were misinterpreting or something like that when patients said they presented with serious things and, at least in their perception, nobody believed them. So I was surprised.

There are so many factors going into everything every day: the exact person you see, the time of day you’re seen, what else is going on in those people’s lives and in the emergency room itself. I do understand all of that. Medicine is very difficult right now, and I don’t know if it’s implicit bias, as a woman in her forties with high blood pressure, that this could only be something psychological, or if it’s burnout. We all work really hard.

I wasn’t there because I thought I had another choice. That wasn’t where I wanted to be at that point in time. I understand everybody’s trying to meet all their metrics. I was an unusual patient, so I was surprised. I was surprised, but I have heard these stories before.

I don’t know what to do with that. It’s hard to be in medicine right now. It’s hard to be a doctor. It’s hard to be a patient. Again, I’m just sort of purging this. I don’t know what to make of all of that or to learn from that. Since I’ve been cared for, everybody’s been really great, and I’m very grateful to live at a time when there’s so much treatment and in a place where there are so many specialists and doctors who took such good care of me. So, I’m counterbalancing it with the gratitude I feel, for sure, for all the people who cared for me too.

Kevin Pho: So when you first heard that you had that diagnosis of stage four renal cell cancer, tell us what was going through your mind and how did you process those emotions during that difficult time?

Kelly Curtin-Hallinan: Well, they first told me about the tumor. They didn’t say stage four originally, and I honestly was a little bit relieved because I was feeling kind of crazy. I was starting to think I felt so sick and was documenting these blood pressures at home, that maybe this is just what it is to have a stressful life. So I think I initially felt relieved to think, “OK. A tumor. I know what that is.” We thought it would just be surgical treatment. It was relieving to at least have something to say this is what it is and what we’re going to do, because the not knowing is certainly the scariest part. I had been previously scanned, and then when they went back and looked, they found a bunch of things that they thought maybe were metastatic cancer. So that was pretty stunning in a short period of time.

Maybe it’s because I’m a pediatrician, but my thought is certainly for my kids. I have three school-aged children. The last thing I wanted to do was inflict the pain of having a sick mom or a possibly very sick mom on them at a really sensitive adolescent time in their lives. My kids at the time were eight through 15. I grew up in a household with six siblings, and it was just not something I wanted for my girls. I’m very grateful. Child Life came and helped me a good deal. Before I talked to them, they helped me with how to talk about it and gave me some books to read with my youngest, which, in fact, inspired us to write our own children’s book about the experience.

I think just the overwhelming thought was, “What do I do now?” Even just logistically: Do I quit my job? Do we take a family vacation together? What do I do? Because even though I’m the sick person, I’m still the person who really needs to make sure my girls are OK. I’m so proud of them; they’ve come through this so strong. But, yeah, it was tough. It was really tough and lots of resources, but difficult.

Kevin Pho: And did you continue practicing medicine as a pediatrician through this?

Kelly Curtin-Hallinan: I was off for a few months. I had actually already been on some leave for the neck pain I was having because that was my predominant symptom. It’s hard to remember. Last year was a little bit of a black hole, but I was off two months maybe, I think. And I’m on reduced duty, but back to working.

Kevin Pho: So you said that when you had to share this news with your daughters, there was no guidebook or guidance in terms of what to do. Where did you turn to for that information, and what kind of advice can you share with the audience if they’re in the unfortunate situation of being in that position?

Kelly Curtin-Hallinan: Child Life did come to see me, and they actually gave me some scripting, which I’m not sure that I can remember exactly right now, but at the time was very helpful. It was something along the lines of, they had already known that I wasn’t well, and that I went to see my doctors and we found something in my body that didn’t belong there. So, I was going to need treatment to get the thing that didn’t belong in my body out of my body.

I told them I couldn’t give them all the answers because I didn’t have them, but I would give the answers to them as was appropriate and as I understood them. They took that OK. My youngest was eight, so that was sort of the whole conversation, plus some reassurance I gave them about things that we did know. We live really close to a great hospital, and we have lots of friends and family who are going to help us out. And they were going to be OK no matter what. They should know that they’re going to be OK. My oldest certainly picked up on the pronoun of “they” versus “we.”

It’s a tough call because I don’t ever want to lie to them and reassure them, because I think it’s really painful to be given false reassurance. We just gave them information as we understood it, that I was going to have surgery and then we’d know more. That’s how we’ve been approaching it the whole time: just what we know now, and we’re just going to do our best and carry on and let ourselves rely on some family. I live in a great community where people picked my kids up and brought us dinner every night for two months. They did really get to see that other people really stepped up for them.

Kevin Pho: Now, after going through this ordeal, how has that changed you as a physician, and what kind of advice do you have for the other physicians and clinicians listening to this story?

Kelly Curtin-Hallinan: Sure. Like a lot of stories, sometimes it’s hard to know what to learn from this. But I certainly think, listen to your patients. I know that almost everybody who presented like I did would’ve had anxiety or panic or something, but there were some other objective signs going on that maybe this didn’t quite fit that. So, listening to your patients I think is a good takeaway.

I talk about this with my girls a lot: just learning to live in the space of uncertainty and the duality of the different things we’re feeling. My kids got a dog as a result of me having cancer, and my youngest especially has been desperate for a dog. After we got the dog, she really went through this period of guilt because she only got the dog because I had cancer, and how we can feel these different things and that’s OK.

It can be lucky and unlucky. We can experience joy after grief. That’s what we wrote our book about, the book about her getting the dog from both her and the dog’s perspective. That’s just a space that it’s OK to sit with. We don’t solve everything. We don’t know what’s going to happen. It’s OK for things to be good and bad, happy and sad. I don’t know. I think that’s a good lesson for everyone, just sitting with those sorts of things.

Kevin Pho: A lot of physicians have that personality type where they want that certainty. Of course, with this story that you’re telling us, you’re still living in that sphere of uncertainty. How do you reconcile that need for certainty given your situation?

Kelly Curtin-Hallinan: I understand that. When I tell the hard story, I do want to rush to the end and say, “But I’m OK now,” because I think we all want to kind of put a button or a bow on something. We want to solve it. I mean, that’s why we went into medicine, right? To fix people, to solve things for them. But that’s not the only thing we do. There were lots of people who cared for me that didn’t solve my problem but certainly gave me lots of care.

I think that’s very challenging. I want an answer. I want an assurance. I want to know how the story ends. Probably for the rest of my life, I’m going to be dealing with this, and hopefully, it’s just going to be an observation thing. But that’s just how it’s going to be. And although it’s more dramatic for me, I don’t know that that’s different than anyone else. It makes us feel better to think we’ll know how this is going to go, we know how we’re going to fix it, but even in medicine, even in really certain circumstances, there’s no absolute guarantee.

Kevin Pho: We’re talking to Kelly Curtin-Hallinan. She’s a pediatrician. Today’s KevinMD article is “My improbable survival of stage 4 cancer.” Kelly, let’s end with some take-home messages you want to leave with the KevinMD audience.

Kelly Curtin-Hallinan: Yeah, and I think a good one is just listening to your patients. Even if we can’t solve or cure their problems, that doesn’t mean we can’t care for them and meet them where they are. And so I think that’s just a good thing to remember.

Kevin Pho: Kelly, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Kelly Curtin-Hallinan: Great. Thanks so much, Kevin.