Cancer Stories: The Art of Oncology

Listen to JCO's Art of Oncology article, "The Power of "I Don't Know" by Dr. Sondos Zayed, who is a radiation oncologist at The Ottawa Hospital and an assistant professor at the University of Ottawa, Canada. The article is followed by an interview with Zayed and host Dr. Mikkael Sekeres. Dr Zayed shares a reflection on the unexpected power of saying "I don't know," and how honest uncertainty can deepen trust, guide care and create space for what truly matters in oncology.
TRANSCRIPT
Narrator: The Power of "I Don't Know", Sondos, Zayed, MD, MPH, FRCPC 
Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.
Joining us today is Dr. Sondos Zayed, a radiation oncologist at the Ottawa Hospital and Assistant Professor at the University of Ottawa, Canada, to discuss her Journal of Clinical Oncology article, "The Power of I Don't Know."
At the time of this recording, our guest has no disclosures.
She and I have agreed to address each other by first names.
Sondos, thank you for contributing to the Journal of Clinical Oncology, and what a pleasure it is to have you join us to discuss your article.
Dr. Sondos Zayed: Thank you so much for having me. It's a privilege.
Mikkael Sekeres: Can you tell us a little bit about yourself? Where are you from? And walk us through your career up to this point.
Dr. Sondos Zayed: Yeah, oh my goodness. So it seems like such a long road and yet so many years left in my career, hopefully. You know, I'm Canadian, and I had the opportunity to grow up in Montreal, which was wonderful, and I went to McGill Medical School, and then after that pursued Radiation Oncology Residency at Western University. And following that I did a fellowship specializing in GI and CNS malignancies with MR-Linac technology in Toronto, and eventually landed in Ottawa, where right now I'm a radiation oncologist treating GI and CNS malignancies and an Assistant Professor at the University of Ottawa.
Mikkael Sekeres: That's fantastic. How far are you out of training?
Dr. Sondos Zayed: Well, this would be officially my second year essentially as an independent radiation oncologist.
Mikkael Sekeres: Wonderful. And I'm curious, what drew you to radiation oncology?
Dr. Sondos Zayed: I always say that it was meant to be. And the reason being, when I was in medical school at McGill, they parachuted us out into very niche specialties that we wouldn't otherwise have exposure to. And essentially the way that they would do that is they'd send us an email and say, you know, "Show up at this place, at this location. Here's attached a PowerPoint, just review it before you go." And I get this email and the PowerPoint is talking about, you know, photons and electrons, linear accelerators. And I'm like, "I have no idea what's going on. This is so confusing." I thought I was in medicine. And so I do follow the instructions and I was so lucky that I had such a wonderful supervisor, and he showed me the machines and I saw the coolest cases that day, and it was just such a wonderful experience and the most captivating. And so I just kept on wanting to go back. And the rest is literally history.
The really, really fascinating thing about radiation oncology is that it's the mix of physics, it's a mix of like technology, and at the same time there's the medicine and the clinical aspect of it. And there's obviously the privilege to be able to support patients on their most vulnerable journeys with their cancer diagnosis and treatment, et cetera. And so it's a mix of the most interesting things all around and I felt like the best fit for me.
Mikkael Sekeres: Well, your passion for it is absolutely palpable. It's really fun to hear the excitement in your voice. Isn't it interesting how one mentor can make the difference in the career path we choose?
Dr. Sondos Zayed: Absolutely. Never underestimate the impact they can have on any single trainee at any point in time. It really does turn things around for many people, and it can inspire them to pursue something that they would have never thought of pursuing before.
Mikkael Sekeres: I had a very similar experience. It was during fellowship that my very first month of fellowship I was placed on the leukemia service with Rich Stone at Dana-Farber, and I never turned back. He was such a fabulous mentor. I couldn't imagine doing anything else with my career.
You write this piece. We loved this piece when you submitted it, myself and the editorial staff. And you write it from the perspective of someone who has recently finished fellowship, which you have. And you write in particular that- this one quote, "During my first year as an attending, I had braced for the steep learning curve, the finality of being the decision maker, the quiet hours at night when treatment decisions still played in my head. What I hadn't prepared for was the weight of uncertainty." It's a great line. So now that you're on the other side of training, what do you think could have prepared you better for the weight of uncertainty?
Dr. Sondos Zayed: I had such wonderful mentors throughout my training, and so they were fantastic and I learned so much from them, but sometimes it just took having to be the final decision maker for me not to have to have the security of somebody to just turn back to immediately after a patient encounter, for example, and be like, "Oh, my supervisor can answer this question," or, "Here are my thoughts, but my attending can also join in the discussion," or give their thoughts as well. So that sort of cushion is no longer there. And so when I'm in the room by myself making those decisions with patients, nothing can really prepare you for that. You just have to go in and then do it yourself.
Mikkael Sekeres: There is a safety net to training by design and thank God there is, right? Where we can always turn to somebody more experienced than us to answer those hard questions or to know what to do. And that's what's pulled out from under us when we become attendings, when we become the final pathway, when people suddenly turn to us and say, "Okay, what are we going to do here?" or, "What's the answer?" Did anybody during your training model "I don't know"? So did you see your own attendings say "I don't know" to patients and see how that played out?
Dr. Sondos Zayed: Not as much, and I think there's a culture in medicine where when people walk into that room, they're hoping that you have all the answers, and you don't want to disappoint them. And so sometimes what we do is we rely on like the evidence and the data and the numbers that are in the literature to answer questions that the patient is asking in an absolute way but we answer it in a probability or a percentage or, "Most likely this will happen," or, "These are the potential, you know, this is the median overall survival," or, "Progression-free survival," or, "This percentage of people have this toxicity," for example. And so it's easy for us to fall back on that cushion of, "These are the numbers and the evidence." And that's what I saw modeled most frequently. But when I started practicing as an attending, what I realized is that when a patient comes in and they sit in front of you, they ask, "How long am I going to live?" What they're asking about is how long they specifically are going to live and not what the median survival in X study is telling us that that's how long they most likely would live, just as an example.
And so what I had to do, when I'm speaking to patients, I kind of separate those two concepts where I start with, "I don't know, because I don't have a crystal ball, and your circumstances and how you respond to treatment is something that I can't predict before anything has started. And it's it's just I really don't know. But what I can say is on average in this study, this is what we see, and there's a 95% confidence interval, and most people fall within that." And so I separate their immediate outcome with the data that we have. So that- because sometimes when I say, "Oh, your median survival is one year," they hear, "I'm going to only live for one year." And then you always have these patients that come through and be like, "You know, they told me I only had six months to live, but here I am two years later." And really it is again, we live in a world of probabilities and confidence intervals, but for the patients themselves, this is their life.
Mikkael Sekeres: Yeah. One of the aspects of your essay that I really liked is the title, "The Power of 'I Don't Know'" because saying, "I don't know," actually does have some power to it. And I've seen this demonstrated in a couple of different ways. I had a boss once who we'd all be in a meeting, and someone would ask a question, and the boss would say, "I don't know." And he said it in a way where one reaction from other people in the meeting could have been, "Oh, how could he be such an idiot and not know the answer to this?" But what wound up happening is people reacted to it by saying, "Gee, if he doesn't know, then it's okay that I don't know also. And maybe if he doesn't know, that means that maybe I thought I knew, but maybe I really don't know as well as I should." And it makes you kind of redouble your efforts to understand whatever's being communicated in the meeting. So I always thought that there was this power in saying, "I don't know," in meetings, but you bring up the power of "I don't know" in patient interactions. So tell me what is the power in saying, "I don't know," to a patient? What is it that that conveys to a patient and how does that affect the relationship that you have with your patients?
Dr. Sondos Zayed: The way that I have learned to see it over the last year and a bit is that when I say, "I don't know," what they hear is honesty, and they hear that, you know, I'm not going to pretend to make up a number or make up an outcome when I'm not sure of it. And they hear that physicians are also very human. And it makes us seem much more approachable. And so what I noticed started happening when I admitted there were things that I don't know where sometimes there was no way of me knowing answers to some of their questions is they started seeing the human aspect of what we do every day. And then they started wanting to share more of their human experience and what really matters to them the most.
So they started sharing, "Okay, well, if if the physician doesn't know, these are the things that are important to me. I want to be able to walk my daughter down the aisle in a few months. I want to be able to play with my grandchildren. I want to be able to be at home when the end comes." So it opened this discussion where my admitting that I don't know is a form of vulnerability, and I say that, and that allowed them to be a bit more vulnerable with what it is that they really wanted to achieve in the time that they had left. And it closed gaps where the physician is seen as not somebody who necessarily has all the answers, but somebody who when they don't know, they will tell us, and what they can tell us in terms of what they can offer for treatment, what possible outcomes are, what they can expect, all these things that they do know, they will tailor to what it is that is important to them. I felt like it was more of a bridge than it was scarier. It built bonds and it built bridges as opposed to them feeling that they're not being cared for.
Mikkael Sekeres: Sounds like it establishes an environment of honesty and that leads to trust in the relationship between you and your patients.
Dr. Sondos Zayed: Yeah, I would agree.
Mikkael Sekeres: When people ask, "How long do I have to live?" it also, what I've learned from communications experts in oncology is that it gives us an opportunity to say, "Why do you ask?" And that can lead to a discussion of goals and what are we working toward here and make sure that we're on the same page with what our patients' expectations are as well.
Dr. Sondos Zayed: Absolutely.
Mikkael Sekeres: You talk about vulnerability with your patients. I wonder if you could talk a little bit about our roles as doctors and nurses and pharmacists, when is it expected that we provide a concrete answer and when is it okay to be vulnerable and say, "I don't know"?
Dr. Sondos Zayed: That really depends on the situation. So I feel like when we should be able to provide concrete answers when we have the evidence and information to be able to answer them in a way that the patient requires. When we don't have that evidence and we don't have that clear picture of, "Oh, this is obviously the answer," based on our usually at least decade plus of training, then being able to admit, "I don't know," actually opens the doors for discussion, anchor that "I don't know" into something more concrete. So when you say, "I don't know," you don't kind of leave it in the air, that can certainly be cause for anxiety. But sort of taking that, "I don't know," and then framing the subsequent part of that conversation about what are the things that you do know about the question that they asked and how you can support them by giving them the information that you are confident about.
Mikkael Sekeres: Has it ever backfired on you?
Dr. Sondos Zayed: Not yet, but I've got many years of practice to come.
Mikkael Sekeres: It has on me. I don't know that I would say maybe "backfired" is too strong, but there are times when I've said, "I don't know," and my patients have said, "But you're the doctor. You're supposed to know."
Dr. Sondos Zayed: Mm-hm.
Mikkael Sekeres: And I found that creates an opportunity to talk about expectations and where the limits of our knowledge are and where we can provide estimates and ranges, but can't give people a precise answer.
Dr. Sondos Zayed: Mm-hm.
Mikkael Sekeres: In your essay, you write, "When the reality doesn't match the implied promise, patients don't lose faith in the data, they lose faith in the person who gave it. That is how trust erodes." I thought that was just very elegantly phrased. Has that ever happened to you where you've provided an estimate maybe of a potential outcome and things didn't work out that way for the patient?
Dr. Sondos Zayed: Yes, that has, and I think most physicians can sort of share that experience, to be honest, where it'll come back and say, "Well, actually I didn't I didn't have that side effect," or, "Actually I lived longer than you'd anticipated," for example, or like, "It didn't have that outcome." And I think that's where the idea of saying, "I don't know," actually came from, where I I realized that a lot of the times when we turn back to the data, patients hear it as like, "Oh, this is the concrete truth of what exactly is going to happen to me." But to sort of distinguish between, "Oh, this is what we see in the data versus what exactly is going to happen to you," making that distinction is what by saying, "I don't know," is what has helped me try to prevent these outcomes from happening, or prevent the erosion of of trust by sounding maybe overconfident with specific things that mean so much to them.
So- and this is their life, right? They come in and they hear these things and they remember them forever. And we see so many people on a daily basis and sometimes we don't keep track of every single word we've ever said. And so- but these words have so much weight to them. And so distinguishing between what we see in and saying, "I don't know," and then, "Here's what I do know," and saying that for them specifically, it's almost impossible to predict, it really helps prevent, in my opinion, the erosion of of that trust so that you don't have somebody saying, "Oh, actually you were wrong afterwards," or misunderstanding or misinterpreting what is that we're trying to convey by giving that information.
Mikkael Sekeres: And that's a great place to end a great discussion and a wonderful piece.
It has been such a pleasure to have Dr. Sondos Zayed, who is a radiation oncologist at the Ottawa Hospital and Assistant Professor at the University of Ottawa, Canada, to discuss her essay, "The Power of 'I Don't Know.'"
Sondos, thank you so very much for submitting your article and for joining us today.
Dr. Sondos Zayed: Thank you so much.
Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague, or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at ASCO.org/podcasts. Until next time, this has been Mikkael Sekeres for JCO Cancer Stories: The Art of Oncology.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Show notes:
Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio:
Dr Sondos Zayed is a Radiation Oncologist at The Ottawa Hospital and Assistant Professor at the University of Ottawa, Canada.

Listen to JCO OP's Art of Oncology Practice article, "When Cancer Becomes a Headline: Reflections from the Clinic" by Dr. Carlos Stecca. The article is followed by an interview with Stecca and host Dr. Mikkael Sekeres. Dr Stecca reflects on the impact of the public illness and death of Brazilian singer and actress Preta Gil on his patients with colorectal cancer and on his own practice as a medical oncologist.
TRANSCRIPT
Narrator: When Cancer Becomes a Headline: Reflections from the Clinic, by Carlos Stecca, MD
Dr. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.
What a pleasure it is today to have Dr. Carlos Stecca, a medical oncologist at Evangelical Mackenzie University Hospital, to discuss his JCO Oncology Practice article, "When Cancer Becomes a Headline: Reflections From the Clinic". Dr. Stecca and I have agreed to call each other by first names.
Carlos, thank you for contributing to JCO Oncology Practice and for joining us today to discuss your article.
Dr. Carlos Stecca: So great to be here. Thank you so much for having me.
Dr. Mikkael Sekeres: I wonder if we could start off by asking you to tell us about yourself. Where are you from and what led you to this point in your career?
Dr. Carlos Stecca: So I am Brazilian. I was born in Brazil in a small town in the south of Brazil, and I did my medical training all in Brazil. So I did medical school here, internal medicine, and medical oncology. My residency period ended in early 2018. I did my residency at the AC Camargo Cancer Center, which is in Sao Paulo. And then right after that, I moved closer to my parents to start my journey as a medical oncologist. And I stayed here in the south for two more years. And then I was lucky enough to be accepted for a clinical research fellowship in genitourinary malignancies at the Princess Margaret Cancer Center. And I had the pleasure to work with Dr. Kala Sridhar for two years. So this was during the pandemic, so 2020, 2021. And then right after that, I moved back to Brazil. And I've been here for the past four years working as a medical oncologist specialized in genitourinary malignancies. But also, well, unfortunately here in Brazil most of us cannot do only one site, so we have to do a little bit more, so I'm doing gynae and GI as well. And in a few days, I'm moving back to Canada. I was lucky enough again to be accepted for a position at the University of British Columbia, so I'm moving in a few days.
Dr. Mikkael Sekeres: Oh, my word. We caught you just in time then.
Dr. Carlos Stecca: Yeah, yeah. I'm moving in four days now.
Dr. Mikkael Sekeres: I can't imagine what it's like to be going between those extremes of weather from Canada down to Brazil. Did your teeth crack when you did that?
Dr. Carlos Stecca: Something like that. Yeah, it was like, I moved in December. So in December we have summer here in Brazil, and it was like 35, 40 degrees Celsius when I left Brazil at the airport. And when I arrived, it was close to minus 20 when I went to Toronto. Yeah.
Dr. Mikkael Sekeres: Oh, my word.
Dr. Carlos Stecca: It was rough.
Dr. Mikkael Sekeres: Well, those of us who live at or near the Southern Hemisphere, I will tell you, I've started to wear puffy jackets and snow caps when it drops into the 60s. Good luck with reacclimating to Canada.
I wonder if we could talk a little bit about the story that sparked this terrific essay. It was so interesting. The Brazilian singer and actress Preta Gil died of rectal cancer in July of 2025 at the age of 50. And she went public with her diagnosis. What is it that she communicated to the public about colorectal cancer?
Dr. Carlos Stecca: So she was very open about her diagnosis since the beginning. So this was very interesting. She is very famous here. She had tons of followers on Instagram and social media, and she was very outspoken about her diagnosis since the first beginning. So she was diagnosed with an early stage disease, and she did a great job raising awareness for this condition, for colorectal cancer. She had a beautiful journey discussing the specifics of her case.
Dr. Mikkael Sekeres: So she talked both about her diagnosis and some of the treatments she was undergoing, but also about symptoms of cancer, right?
Dr. Carlos Stecca: She really engaged in this discussion about her diagnosis and how she found out about her cancer. So rectal bleeding, this was disclosed in her stories on Instagram, and so she was very open about this. And it really helped people understand the condition, and it really increased the number of screening tests that Brazilians were doing. And of course, we saw this increasing uptake of the screening tests, which was amazing.
Dr. Mikkael Sekeres: In a way, I think she did a real public service, I think, both for early detection of colorectal cancer with symptoms, also for screening, so asymptomatic people who would undergo colonoscopies, and also demystified a little bit the treatment of colorectal cancer. In the US, we saw a similar phenomenon when the actor Chad Boseman of Black Panther movie franchise fame died of colorectal cancer in 2020 at the age of 43. These deaths have also sparked an international conversation about cancer in younger adults. Are you seeing that in your clinic?
Dr. Carlos Stecca: Yes, definitely. We're seeing many more cases of cancer diagnosed in the younger population, right? So yeah, this discussion was very important to have, not only because the screening tests increased in patients after the age of 50 years old without any symptoms, but also raised awareness for those symptoms that should trigger the proper investigation.
Dr. Mikkael Sekeres: I wonder if you could speculate a little bit about why it is that we're seeing more cancer in younger adults. Do you think it has anything to do, for example, with diet and people eating more ultra-processed foods? Is it a phenomenon? I've even heard people talk about microplastics and whether that could be contributing. Also, recently, there was an article that came out that speculated that while we're seeing more cancers in younger adults, we're not seeing more deaths in younger adults, so we may just be picking these up earlier as more people are going to be screened or for additional testing at a younger age.
Dr. Carlos Stecca: Yeah, I think so. I think this is definitely the case. I think younger adults are eating more processed foods, and we know that this is an obvious risk factor for colorectal cancer and other cancers as well. And maybe obesity as well, we are seeing this as a pandemic now in the world, right? So we are seeing this especially in developing countries. And here in Brazil, of course, we are seeing this as a phenomenon.
Dr. Mikkael Sekeres: It's so fascinating. I feel like we won't really know the answer about the uptick in cancers in younger adults for years until some of the data settle out, including the data about people during the COVID pandemic not going for screening and testing as often and whether we're now starting to see the downstream effects of that.
Dr. Carlos Stecca: For sure, I think this is- well, during the pandemic I was in Canada, but shortly after the pandemic was coming to an end, I came back to Brazil, and I saw that. I saw that a lot of patients came to the clinic with more advanced cancers because they missed those opportunities of being seen by a physician during the pandemic, because of course, for obvious reasons, people were not coming to the clinic. And we saw that, a huge number of patients being diagnosed with late-stage disease because of that.
Dr. Mikkael Sekeres: It's fascinating. There's a named phenomenon called the Angelina Jolie effect. I don't know if you remember following the actress's 2013 opinion piece about genetic testing for hereditary cancers such as BRCA1 and following her prophylactic mastectomy. She is a carrier of a mutation. There was a wave of testing that occurred thereafter. So some good can come from celebrities going public with their cancer diagnosis.
Dr. Carlos Stecca: Oh, definitely, definitely. I think that more good can come from their diagnosis and them being verbal about this than the downsides. Of course, the positive side of it is definitely outweighing the negative effect.
Dr. Mikkael Sekeres: You write a really thoughtful essay. You mention downsides, and there can be some downsides. One of the things you wrote in your essay was, "Yet for others already living with colorectal cancer, the same story had the opposite effect. Instead of empowerment, it fueled anxiety, guilt, and resignation. Some patients grew silent, fearing their treatment was futile as they compared themselves to a celebrity who had access to the best hospitals, specialists, and resources, and still passed away. Others questioned why they had not caught their cancer earlier, internalizing blame." Can you talk a little bit more about some of the unintended consequences of a celebrity who goes public with his or her cancer diagnosis?
Dr. Carlos Stecca: That was exactly it, right? I was witnessing this in my clinic. I work in a public hospital here, and I would see those patients coming to me and voicing their concerns about their diagnosis, colorectal cancer, that was now in the spotlight because of that famous person that battled with colorectal cancer and unfortunately passed away after two years of starting her journey. And that was something quite difficult for the patients because, as you mentioned, and as I wrote in the text, some of those patients were in the public system and they were comparing themselves, comparing their diagnosis with the diagnosis of someone who had endless resources. And in fact, she even went to the United States and took part in a clinical trial. She participated in a clinical trial. And yet she was not able to overcome this diagnosis, and sadly she passed away.
So, most of our patients were coming to the clinic and voicing their fears, like, "If even she couldn't get through this, how can I? I'm a simple person and I'm here in this world of limited resources." And here in Brazil, we do have the public system and the private system, and there is a huge gap between what we can do in one system and another. That was a concern that they voiced.
Dr. Mikkael Sekeres: I'm sorry she passed away. How did you deal with that? So how did you respond to patients who said, "Gee, if this famous actress with unlimited resources dies from her cancer, what hope do I have?"
Dr. Carlos Stecca: Yeah, so I think this is very difficult, right? And this is something that I was learning to understand now. Because as you mentioned, Chadwick Boseman and Angelina Jolie, we heard of those stories, but I never felt that this would be impactful in my clinic, that there would be patients voicing their concerns about their diagnosis being in the spotlight. And this is something that happened to me now. I would often see those patients, and I started to think about the downsides of a cancer being on a headline for those already living with cancer, and already living with that cancer and having their cancer in the spotlight. And so that was something that I needed to hear and address their concerns more actively than before, right? So this is something that is really important. And sometimes it is as important as discussing toxicity related to chemotherapy or other things related to the treatment itself. But addressing their concerns, it would be a way to alleviate the burden that the patients are experiencing from that.
Dr. Mikkael Sekeres: So what would you say to them? If somebody said to you, "How can I do well when this famous actress didn't do well?", what would you say?
Dr. Carlos Stecca: The first thing is to talk to the patient that every diagnosis is different. So we do have differences in staging, we do have differences in biology of the tumor. And as we study more those diseases and every type of cancer, but here, especially colorectal cancer, we are seeing that those differences are very important in the treatment and they will be part of the prognosis as well. So no disease is the same as other disease. So your experience is unique. So your diagnosis is in a certain way unique. Your treatment might be different, right?
Dr. Mikkael Sekeres: I like how you personalized that for each patient.
I really love how you end this essay. You write, "In those quiet moments after a headline, when fear enters the exam room, my responsibility is clear. I must not only prescribe treatment, but also restore perspective, dignity, and courage. Sometimes that is the most difficult, yet most essential part of being an oncologist." I remember, Carlos, one of my patients once described what we do as being almost pastoral. He himself was a minister and said this. And an important part of our job is to provide that context, but also a space where people can feel forgiveness for what they perceive as their fault. I wonder if you could reflect on that a little bit. How is it that, it almost sounds like it's too extreme, but we provide a sanctuary where patients can forgive themselves for the guilt they've been carrying around.
Dr. Carlos Stecca: Yeah. No, I think this is very important. As medical oncologists, we are more than just physicians. We become friends with the patients, right? So most of the time I do create this relationship, this strong bond with the patient, because I worked as a family doctor before, so I treated patients very intimately as well. But nothing compares to being an oncologist now, because I think that the emotional burden associated with the profession is extremely high. And it's very difficult for the patient, for the family. And so we become part of their families and part of their story and their journey throughout their whole journey with the cancer. So it can be very emotional. I think that it's much more than being a physician and treating patients and prescribing treatments and discussing the biology of the tumor. And it's much more than that. And I think that being an oncologist entails all that, entails being part of their story and engaging in an emotional journey that they are having with the cancer. Especially here in Brazil, I think that the diagnosis of cancer has always been challenging. And I think that a patient's experience is unique and addressing the emotional part of it is very important.
Dr. Mikkael Sekeres: Well, what a beautiful way to sum up what we do. We become part of our patients' stories and journey, and they become part of ours, and I think that's why we write about it.
It has been such a pleasure to have Dr. Carlos Stecca to discuss his essay, "When Cancer Becomes a Headline: Reflections From the Clinic". Carlos, thank you so much for submitting your article and for joining us today.
Dr. Carlos Stecca: Thank you so much for having me. It was a pleasure.
If you enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you are looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at asco.org/podcasts.
Until next time, this has been Mikkael Sekeres for JCO's Cancer Stories: The Art of Oncology.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Show notes:
Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio:
Dr Carlos Stecca is a medical oncologist at Evangelical Mackenzie University Hospital.

Listen to JCO's Art of Oncology article, "Mother's Grief" by Dr. Margaret Cupit-Link, who is an assistant professor of pediatric hematology/oncology at Cardinal Glennon Children's Hospital of St. Louis University. The article is followed by an interview with Cupit-Link and host Dr. Mikkael Sekeres. Dr Cupit-Link shares a pediatric oncologist's experience of a patient's death through the new lens of motherhood.
TRANSCRIPT
AOO 26E03
Narrator: Mother's Grief, by Margaret Cupit-Link, MD, MSCI 
Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I'm professor of medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.
What a treat it is today to have joining us our third place Narrative Medicine Contest winner, Maggie Cupit-Link, an assistant professor of Pediatric Hematology Oncology at Cardinal Glennon Children's Hospital of St. Louis University to discuss her Journal of Clinical Oncology article, "Mother's Grief."
Both Maggie and I have agreed to call each other by first names.
Maggie, thank you for contributing to the Journal of Clinical Oncology and for joining us to discuss your winning article.
Maggie Cupit-Link: Thank you so much for having me and for choosing my article. It's an honor to get to speak with this group. I know a lot of our listeners have a lot in common with us in our profession, so I'm excited to be here.
Mikkael Sekeres: We're excited to have you. You are such a terrific writer. Tell us about yourself. Where are you from, and walk us through where you are at this stage of your career?
Maggie Cupit-Link: I grew up in a small town in Mississippi called Brookhaven, and I ended up attending college in Memphis, Tennessee, which is important to note because I was a pre-med student when I got diagnosed with childhood cancer, Ewing sarcoma, at the age of 19. And so that really shaped my career goals. And I was treated at St. Jude Children's Research Hospital, which is very formative as well, given that I was surrounded by childhood cancer patients. I ended up doing my medical school at the Mayo Clinic Medical School in Minnesota, which was very cold for me but a wonderful experience.
And then went to St. Louis to WashU, St. Louis Children's for my residency, and then back to Memphis for my fellowship at St. Jude. But now I'm back in St. Louis at the other hospital, Cardinal Glennon, which is affiliated with St. Louis University. And my husband's originally from St. Louis, so it was always a dream of his to be back here. And once I ended up here, I really have loved St. Louis as well. So this is home for us and our two babies who are ages one and two, and they are one year and one day apart exactly.
Mikkael Sekeres: Oh my word. Well, you are definitely in the thick of it, aren't you?
Maggie Cupit-Link: It's a very busy, chaotic life, but I'm very grateful. And so that makes it worth it.
Mikkael Sekeres: That sounds fantastic. Well, I'm calling in from Miami today, so believe me, the thought of being in Rochester, Minnesota is not very appealing in mid-February.
Maggie Cupit-Link: I believe that. I'm glad I'm not there right now.
Mikkael Sekeres: Gee, I didn't know about your history of having cancer yourself. What was it like to return for fellowship at the place where you yourself were treated?
Maggie Cupit-Link: That was an incredible experience for me. It was very emotional as well. I remember the first day of fellowship getting a tour and crying throughout the tour. More tears of joy, but it was, it was really surreal. It was really special. And I got to learn from some of the doctors who treated me, which made it really special as well. I'm really glad I got to train there and to be at a place with such a large volume of pediatric oncology patients was a really great learning experience.
Mikkael Sekeres: I wonder, infrastructures, buildings change over a few years, particularly in medical centers. Was there ever a moment when you were talking to a patient who was sitting in the same chair where you were sitting when you were a patient? And was that something that you were open to sharing with people?
Maggie Cupit-Link: All the time, on all accounts. Yes. The infrastructure has changed. It continues to grow significantly, but the clinic hadn't changed at that time. I think it will in the next couple of years. But the solid tumor clinic where I was treated was exactly the same. And there were many times where I took care of sarcoma patients and Ewing sarcoma patients who were teenagers as I had been in the very same rooms and times where I learned from my own oncologist as he was teaching me and training me. So it made it really special.
It made empathy a big part of my experience. And I think it is for all of our experiences in oncology in particular, but I think that empathy has always been a huge part of my job and something that comes to me naturally, which is a gift. But as is sort of alluded to in my piece that we're discussing today, can be difficult at times. Empathy can also sometimes be a curse when it's hard to turn off, and that's been something as a mother now that I've really had to learn to cope with is like figuring out when my empathy might not serve me in moments and might not serve the patient in moments, and when it is an asset and a gift.
Mikkael Sekeres: Empathy at the deepest possible level, having walked the same path your patients have walked as well. Really a remarkable story, Maggie.
Maggie Cupit-Link: I'm very blessed to get to be alive and well, but especially to get to have a job that's so meaningful to me and hopefully can share my experience in a way that helps my patients.
Mikkael Sekeres: And you share it through writing as well. When did you start writing narrative pieces?
Maggie Cupit-Link: I started writing a lot when I was a cancer patient for more like a journal experience. And I had a CaringBridge page, which is one of these social media pages where families update their friends a lot on what's going on. And I started journaling daily, and then ended up publishing a book of my experience as a patient. I had also done a lot of writing of letters to my grandfather who's a retired professor of Christian philosophy because during my illness, I was really struggling with my faith and having a lot of questions as we all do when encountering children with cancer, "Why? Why God?" And so the book is actually called Why God? Suffering Through Cancer Into Faith, and it's a collection of narratives that I exchanged with my grandfather. And his part is more philosophical, and mine is more raw and emotional and expressive of the grief that I was feeling at the time as a patient.
So that was the first big time I did narrative medicine, but I've found myself continuing to do so as a way to cope and process things that I go through. And the most recent one before the one we're discussing today was a piece about fertility that was published in JCO Cancer Stories and also I got to do the podcast for that piece. And that was about my experience losing fertility as a patient and how that has impacted what I tell patients about fertility and how I counsel them about possible fertility loss. And the plot twist there is that I actually have two miracle babies that I birthed for some reason after 13 years of menopause. So now I'm not infertile, but I'm very passionate about fertility as well.
Mikkael Sekeres: Well, I remember that essay. I also remember how impactful that was to a lot of people who read it and how helpful it was. And gave a lot of people hope.
Maggie Cupit-Link: I think hope is very, very important and necessary in the realm of cancer.
Mikkael Sekeres: My word, you have so much that you could potentially share with your patients on their journey. Have you also been open to sharing your faith with them?
Maggie Cupit-Link: Absolutely. I am. I think that it's something I'm really cautious not to push on anyone, but whenever patients bring up faith and want to talk about that or when they introduce that as a topic and make it clear that that's something that they are thinking about, then I'm definitely very open about that too.
Mikkael Sekeres: Well, that must be a comfort to them.
Maggie Cupit-Link: I hope so. It's a comfort to me as well. For me, I don't know how I would do this job and lose patients and children to death if I didn't believe in something more.
Mikkael Sekeres: It's beautifully said.
In this essay, you make a close connection to your patient and his mother when you write, "I imagined my own son contained in a hospital room, attached to an IV pole, vomiting from chemotherapy. I could feel the warmth of his skin against mine and the weight of his body on my chest. And as I looked back at Tristan's mother, I could only support her decision to hold her baby." What is the importance of this connection to patients, and are there any downsides? In other words, you know, in medical school, we're often taught to keep a distance, or there was an essay I wrote with Tim Gilligan, who's a GU oncologist and this incredible communicator, where we wonder if all the communication classes we're exposed to in medical school actually undo our natural communication and our natural connection because we figure, "Gee, if we have to take all these classes on communication, maybe we've got to communicate differently." What is the importance of this connection to patients, and are there any downsides? Like, should we keep a distance or not?
Maggie Cupit-Link: I don't know if we should, but I know that I can't. This is my gift and my curse. I think that taking care of someone with a sick baby, especially as a parent, is so human and so full of emotion that it's not possible for me not to feel that connection. Now, I do think there's a point at which I have to be careful that what I'm doing and what I'm expressing doesn't make it harder for them. I think it's important for them to know that I feel for them and that I am having these feelings, but I don't want it to become about me when I'm trying to help them. So I once in one of these medical school situations was told that the moment the family begins to comfort me might be a moment that I've known I've gone too far. And so I think that's a rule of thumb I think about is like, if I'm crying in this moment with this family, does that make them feel loved, or does that make them feel like they need to worry about me? And I think most of the time it just makes them feel loved, but that's sort of the tension there.
I think when it comes to me too, I've been unable so far to put up boundaries to protect myself emotionally. I don't know that I'm capable of that, but more importantly, I don't think that's authentic for me. And so I don't do that. I'm trying to process and grieve so that I can cope and continue to be the doctor and person that I am. But I refuse to put up emotional walls because I don't think that will serve the patient or be authentic to who I am as a person.
Mikkael Sekeres: You bring up a couple of really important notions, and the first is authenticity, being true to ourselves. And if we're not true to ourselves, our patients will see through that and wonder if we're not being true to them. And also having our antennae up to get the pulse of the room, to see how people are reacting to what we're doing and making sure that we're serving our patient's needs more than we're serving our own needs when we're actually in the clinic room with our patients.
Maggie Cupit-Link: Definitely, I agree. And and those scenarios in medical school, I remember just thinking to myself that it didn't make a lot of sense to me and that I was lucky that this class wasn't meant for me, that I'll just do what I feel is appropriate. And I always did really well in the simulations, but I had no way to articulate why I knew what to do. It just, for me, I was so lucky that part came naturally, and I think it does in many of us who find medicine as a calling. But I don't know how to teach or learn that.
Mikkael Sekeres: Well, you've seen it from the other side as well. I mean, you strike me as being a naturally empathic person and someone who's tuned into other people's emotions. But you've also been there. You're more tuned in than I am, having been someone who's had cancer. I've certainly had close family members who've had cancer, my mom has lung cancer, for example. So I've been in the role of somebody in the room who's supporting somebody with cancer, but I haven't myself had cancer the way you have.
Maggie Cupit-Link: It definitely impacts my empathy. And I think that I was surprised after becoming a mother how much that also changed things for me and impacted my empathy further. Until you're a parent, you really don't know the depth and intensity of your love for a child or a person. And it was only then that I realized how heartbreaking it might be to lose a child. It's very difficult to suppress that empathy. And that's when it might not be helpful sometimes is when I'm leaving work and thinking about someone who lost their baby and knowing that no matter how much I empathize with them, it's not going to fix it. It's been the first time in my career and maybe my life where I've had to tell myself that maybe it's okay not to have empathy in this moment. Like, maybe I should turn it off for a little bit so that I can relax and enjoy my baby.
Mikkael Sekeres: My God, it's such an interesting perspective. I think as oncologists, we have this different perspective on illness and, and if we're smart about it, if we're really focused and in the moment, we appreciate the aspects of life and realize how precious they can be. And that can be a lovely thing and something we pass on to our kids. I will tell you, my own children have accused me of brushing off some of their maladies with the refrain, "Well, it may hurt you, but it's not leukemia."
Maggie Cupit-Link: I've heard that's common with physician's children, but it takes a lot to get a rise out of the parent.
Mikkael Sekeres: You write at one point in the essay, "At first, I believed that I had no right to grieve in this way, that it was his mother's grief, Tristan's mother, not mine. I reminded myself that I was not Tristan's mother. I did not give birth to him or name him." Now, we recently published an essay about grieving called "Are You Bereaved?" by Trisha Paul, where she also wonders whether we as oncologists have a right to grieve. What do you think? Do we?
Maggie Cupit-Link: I have to note that Trisha and I were co-fellows together in our training, so I'm happy that you mentioned her. And I need to go read that essay. I haven't read that one, so I will.
It's weird to wonder if we have the right to grieve. My grandmother is a psychologist, and I remember as a child saying like, "I know I shouldn't feel this way, but" about some random thing. And I remember her saying, "Feelings aren't 'should'. Feelings just 'are'." So like, maybe it doesn't matter if we should or shouldn't, but if we are grieving, we're grieving.
I think in some ways it feels like I don't have the right to grieve because I have this wonderful, happy life. And this can be true of survivorship as well when I'm taking care of many children who won't get to be survivors, especially because I care for a lot of sarcoma patients. But I often wonder like, "Am I allowed to be this happy," or "am I allowed to not be happy because there's so much grief in their lives?" So it's hard. I feel this tension often like, I'm not allowed to grieve as much as this mom, but also I better be really, really happy because I'm okay and my baby's okay. It's hard when we compare our emotions to other people's who are going through different things. But it, but it's hard not to wonder, like, "Am I allowed to feel this way?" "Am I supposed to feel this way?" For me, that's when writing is helpful. Just writing down what I feel in great detail helps me move through the feelings, I guess.
Mikkael Sekeres: Part of the processing of it.
You described the code call for your patient vividly. You know, you draw us as readers into your essay and into that moment. We've all been in that moment. I remember when I was just talking to somebody about when I was in the intensive care unit, when I was a resident, and how at that time, a psychiatrist actually met with us every week to help us process what we were seeing in the intensive care unit, which was really remarkably forward thinking for how long ago I trained.
Maggie Cupit-Link: That's really great.
Mikkael Sekeres: How did you process it in real time and afterwards though?
Maggie Cupit-Link: That day, even now, an aspect of me was dreading this conversation because I feel nauseated when I think back to that day, to that code, and I feel like I'm going to cry. And I don't feel like that in every code, but I think it was because of the parallels between the little boy and my baby. To note, my baby, Houston, he is a big, bald, fat faced baby with a binky in his mouth at all times, and Tristan was a fat, bald baby with a binky in his mouth at all times. And so even though there was a bit of an age difference, when I saw Tristan, I just thought of Houston, and I couldn't separate that.
I feel often when I'm doing a lumbar puncture or running a code in real time on a patient, I can sort of dehumanize to the degree that's helpful where I just do what needs to be done and put aside the ick feelings. But with that child, in that code, I couldn't. And luckily I didn't have to do anything but stand there and tell them when to stop or just be supportive, but I felt sick. I felt like I couldn't do anything to help. I didn't feel like a doctor in that moment. I felt like a family member of that child. And that was really difficult.
I was so lucky, and I don't know how much the piece reflects this, but the other doctor who was there, the other oncologist, is a mentor of mine who's older than me and wiser than me and very experienced. And I call her my 'work mom' lovingly. She was there, and she stepped in and helped me and checked on me and made me feel like I could handle things. It would have been much worse without her there.
Mikkael Sekeres: We're fortunate when we do have our friends and colleagues to help process this because if you're not in this field, at that moment it's hard to understand just how deeply we can also feel the pain that our patients are going through.
Maggie Cupit-Link: Absolutely.
Mikkael Sekeres: And I do hope you'll retain that description of Houston for when you give the speech at his wedding because I'm sure he'd appreciate that.
Maggie Cupit-Link: The big fat bald binky baby. Yes. Houston is now in his 'mama phase' where if I'm not holding him at all times, he fake cries, "Mama," until I do pick him up. So it's been exhausting physically, but I must pick him up.
Mikkael Sekeres: I have to say it has been such a pleasure having you, Maggie Cupit-Link, join us to discuss your essay, "Mother's Grief." Thank you so much for submitting your article and for joining us today.
Maggie Cupit-Link: Thank you so much for having me, and thank you for everyone for reading.
Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at asco.org/podcasts.
Until next time, this has been Mikkael Sekeres for JCO's Cancer Stories: The Art of Oncology.
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Show Notes:
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Guest Bio:
Dr Margaret Cupit-Link is an assistant professor of pediatric hematology/oncology at Cardinal Glennon Children's Hospital of St. Louis University.
 
Additional Reading: 
It Mattered Later
Why, God?: Suffering Through Cancer into Faith, by Margaret Carlisle Cupit, et al

Listen to JCO's Art of Oncology article, "Mother's Grief" by Dr. Margaret Cupit-Link, who is an assistant professor of pediatric hematology/oncology at Cardinal Glennon Children's Hospital of St. Louis University. The article is followed by an interview with Cupit-Link and host Dr. Mikkael Sekeres. Dr Cupit-Link shares a pediatric oncologist's experience of a patient's death through the new lens of motherhood.
TRANSCRIPT
AOO 26E03
Narrator: Mother's Grief, by Margaret Cupit-Link, MD, MSCI 
Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I'm professor of medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.
What a treat it is today to have joining us our third place Narrative Medicine Contest winner, Maggie Cupit-Link, an assistant professor of Pediatric Hematology Oncology at Cardinal Glennon Children's Hospital of St. Louis University to discuss her Journal of Clinical Oncology article, "Mother's Grief."
Both Maggie and I have agreed to call each other by first names.
Maggie, thank you for contributing to the Journal of Clinical Oncology and for joining us to discuss your winning article.
Maggie Cupit-Link: Thank you so much for having me and for choosing my article. It's an honor to get to speak with this group. I know a lot of our listeners have a lot in common with us in our profession, so I'm excited to be here.
Mikkael Sekeres: We're excited to have you. You are such a terrific writer. Tell us about yourself. Where are you from, and walk us through where you are at this stage of your career?
Maggie Cupit-Link: I grew up in a small town in Mississippi called Brookhaven, and I ended up attending college in Memphis, Tennessee, which is important to note because I was a pre-med student when I got diagnosed with childhood cancer, Ewing sarcoma, at the age of 19. And so that really shaped my career goals. And I was treated at St. Jude Children's Research Hospital, which is very formative as well, given that I was surrounded by childhood cancer patients. I ended up doing my medical school at the Mayo Clinic Medical School in Minnesota, which was very cold for me but a wonderful experience.
And then went to St. Louis to WashU, St. Louis Children's for my residency, and then back to Memphis for my fellowship at St. Jude. But now I'm back in St. Louis at the other hospital, Cardinal Glennon, which is affiliated with St. Louis University. And my husband's originally from St. Louis, so it was always a dream of his to be back here. And once I ended up here, I really have loved St. Louis as well. So this is home for us and our two babies who are ages one and two, and they are one year and one day apart exactly.
Mikkael Sekeres: Oh my word. Well, you are definitely in the thick of it, aren't you?
Maggie Cupit-Link: It's a very busy, chaotic life, but I'm very grateful. And so that makes it worth it.
Mikkael Sekeres: That sounds fantastic. Well, I'm calling in from Miami today, so believe me, the thought of being in Rochester, Minnesota is not very appealing in mid-February.
Maggie Cupit-Link: I believe that. I'm glad I'm not there right now.
Mikkael Sekeres: Gee, I didn't know about your history of having cancer yourself. What was it like to return for fellowship at the place where you yourself were treated?
Maggie Cupit-Link: That was an incredible experience for me. It was very emotional as well. I remember the first day of fellowship getting a tour and crying throughout the tour. More tears of joy, but it was, it was really surreal. It was really special. And I got to learn from some of the doctors who treated me, which made it really special as well. I'm really glad I got to train there and to be at a place with such a large volume of pediatric oncology patients was a really great learning experience.
Mikkael Sekeres: I wonder, infrastructures, buildings change over a few years, particularly in medical centers. Was there ever a moment when you were talking to a patient who was sitting in the same chair where you were sitting when you were a patient? And was that something that you were open to sharing with people?
Maggie Cupit-Link: All the time, on all accounts. Yes. The infrastructure has changed. It continues to grow significantly, but the clinic hadn't changed at that time. I think it will in the next couple of years. But the solid tumor clinic where I was treated was exactly the same. And there were many times where I took care of sarcoma patients and Ewing sarcoma patients who were teenagers as I had been in the very same rooms and times where I learned from my own oncologist as he was teaching me and training me. So it made it really special.
It made empathy a big part of my experience. And I think it is for all of our experiences in oncology in particular, but I think that empathy has always been a huge part of my job and something that comes to me naturally, which is a gift. But as is sort of alluded to in my piece that we're discussing today, can be difficult at times. Empathy can also sometimes be a curse when it's hard to turn off, and that's been something as a mother now that I've really had to learn to cope with is like figuring out when my empathy might not serve me in moments and might not serve the patient in moments, and when it is an asset and a gift.
Mikkael Sekeres: Empathy at the deepest possible level, having walked the same path your patients have walked as well. Really a remarkable story, Maggie.
Maggie Cupit-Link: I'm very blessed to get to be alive and well, but especially to get to have a job that's so meaningful to me and hopefully can share my experience in a way that helps my patients.
Mikkael Sekeres: And you share it through writing as well. When did you start writing narrative pieces?
Maggie Cupit-Link: I started writing a lot when I was a cancer patient for more like a journal experience. And I had a CaringBridge page, which is one of these social media pages where families update their friends a lot on what's going on. And I started journaling daily, and then ended up publishing a book of my experience as a patient. I had also done a lot of writing of letters to my grandfather who's a retired professor of Christian philosophy because during my illness, I was really struggling with my faith and having a lot of questions as we all do when encountering children with cancer, "Why? Why God?" And so the book is actually called Why God? Suffering Through Cancer Into Faith, and it's a collection of narratives that I exchanged with my grandfather. And his part is more philosophical, and mine is more raw and emotional and expressive of the grief that I was feeling at the time as a patient.
So that was the first big time I did narrative medicine, but I've found myself continuing to do so as a way to cope and process things that I go through. And the most recent one before the one we're discussing today was a piece about fertility that was published in JCO Cancer Stories and also I got to do the podcast for that piece. And that was about my experience losing fertility as a patient and how that has impacted what I tell patients about fertility and how I counsel them about possible fertility loss. And the plot twist there is that I actually have two miracle babies that I birthed for some reason after 13 years of menopause. So now I'm not infertile, but I'm very passionate about fertility as well.
Mikkael Sekeres: Well, I remember that essay. I also remember how impactful that was to a lot of people who read it and how helpful it was. And gave a lot of people hope.
Maggie Cupit-Link: I think hope is very, very important and necessary in the realm of cancer.
Mikkael Sekeres: My word, you have so much that you could potentially share with your patients on their journey. Have you also been open to sharing your faith with them?
Maggie Cupit-Link: Absolutely. I am. I think that it's something I'm really cautious not to push on anyone, but whenever patients bring up faith and want to talk about that or when they introduce that as a topic and make it clear that that's something that they are thinking about, then I'm definitely very open about that too.
Mikkael Sekeres: Well, that must be a comfort to them.
Maggie Cupit-Link: I hope so. It's a comfort to me as well. For me, I don't know how I would do this job and lose patients and children to death if I didn't believe in something more.
Mikkael Sekeres: It's beautifully said.
In this essay, you make a close connection to your patient and his mother when you write, "I imagined my own son contained in a hospital room, attached to an IV pole, vomiting from chemotherapy. I could feel the warmth of his skin against mine and the weight of his body on my chest. And as I looked back at Tristan's mother, I could only support her decision to hold her baby." What is the importance of this connection to patients, and are there any downsides? In other words, you know, in medical school, we're often taught to keep a distance, or there was an essay I wrote with Tim Gilligan, who's a GU oncologist and this incredible communicator, where we wonder if all the communication classes we're exposed to in medical school actually undo our natural communication and our natural connection because we figure, "Gee, if we have to take all these classes on communication, maybe we've got to communicate differently." What is the importance of this connection to patients, and are there any downsides? Like, should we keep a distance or not?
Maggie Cupit-Link: I don't know if we should, but I know that I can't. This is my gift and my curse. I think that taking care of someone with a sick baby, especially as a parent, is so human and so full of emotion that it's not possible for me not to feel that connection. Now, I do think there's a point at which I have to be careful that what I'm doing and what I'm expressing doesn't make it harder for them. I think it's important for them to know that I feel for them and that I am having these feelings, but I don't want it to become about me when I'm trying to help them. So I once in one of these medical school situations was told that the moment the family begins to comfort me might be a moment that I've known I've gone too far. And so I think that's a rule of thumb I think about is like, if I'm crying in this moment with this family, does that make them feel loved, or does that make them feel like they need to worry about me? And I think most of the time it just makes them feel loved, but that's sort of the tension there.
I think when it comes to me too, I've been unable so far to put up boundaries to protect myself emotionally. I don't know that I'm capable of that, but more importantly, I don't think that's authentic for me. And so I don't do that. I'm trying to process and grieve so that I can cope and continue to be the doctor and person that I am. But I refuse to put up emotional walls because I don't think that will serve the patient or be authentic to who I am as a person.
Mikkael Sekeres: You bring up a couple of really important notions, and the first is authenticity, being true to ourselves. And if we're not true to ourselves, our patients will see through that and wonder if we're not being true to them. And also having our antennae up to get the pulse of the room, to see how people are reacting to what we're doing and making sure that we're serving our patient's needs more than we're serving our own needs when we're actually in the clinic room with our patients.
Maggie Cupit-Link: Definitely, I agree. And and those scenarios in medical school, I remember just thinking to myself that it didn't make a lot of sense to me and that I was lucky that this class wasn't meant for me, that I'll just do what I feel is appropriate. And I always did really well in the simulations, but I had no way to articulate why I knew what to do. It just, for me, I was so lucky that part came naturally, and I think it does in many of us who find medicine as a calling. But I don't know how to teach or learn that.
Mikkael Sekeres: Well, you've seen it from the other side as well. I mean, you strike me as being a naturally empathic person and someone who's tuned into other people's emotions. But you've also been there. You're more tuned in than I am, having been someone who's had cancer. I've certainly had close family members who've had cancer, my mom has lung cancer, for example. So I've been in the role of somebody in the room who's supporting somebody with cancer, but I haven't myself had cancer the way you have.
Maggie Cupit-Link: It definitely impacts my empathy. And I think that I was surprised after becoming a mother how much that also changed things for me and impacted my empathy further. Until you're a parent, you really don't know the depth and intensity of your love for a child or a person. And it was only then that I realized how heartbreaking it might be to lose a child. It's very difficult to suppress that empathy. And that's when it might not be helpful sometimes is when I'm leaving work and thinking about someone who lost their baby and knowing that no matter how much I empathize with them, it's not going to fix it. It's been the first time in my career and maybe my life where I've had to tell myself that maybe it's okay not to have empathy in this moment. Like, maybe I should turn it off for a little bit so that I can relax and enjoy my baby.
Mikkael Sekeres: My God, it's such an interesting perspective. I think as oncologists, we have this different perspective on illness and, and if we're smart about it, if we're really focused and in the moment, we appreciate the aspects of life and realize how precious they can be. And that can be a lovely thing and something we pass on to our kids. I will tell you, my own children have accused me of brushing off some of their maladies with the refrain, "Well, it may hurt you, but it's not leukemia."
Maggie Cupit-Link: I've heard that's common with physician's children, but it takes a lot to get a rise out of the parent.
Mikkael Sekeres: You write at one point in the essay, "At first, I believed that I had no right to grieve in this way, that it was his mother's grief, Tristan's mother, not mine. I reminded myself that I was not Tristan's mother. I did not give birth to him or name him." Now, we recently published an essay about grieving called "Are You Bereaved?" by Trisha Paul, where she also wonders whether we as oncologists have a right to grieve. What do you think? Do we?
Maggie Cupit-Link: I have to note that Trisha and I were co-fellows together in our training, so I'm happy that you mentioned her. And I need to go read that essay. I haven't read that one, so I will.
It's weird to wonder if we have the right to grieve. My grandmother is a psychologist, and I remember as a child saying like, "I know I shouldn't feel this way, but" about some random thing. And I remember her saying, "Feelings aren't 'should'. Feelings just 'are'." So like, maybe it doesn't matter if we should or shouldn't, but if we are grieving, we're grieving.
I think in some ways it feels like I don't have the right to grieve because I have this wonderful, happy life. And this can be true of survivorship as well when I'm taking care of many children who won't get to be survivors, especially because I care for a lot of sarcoma patients. But I often wonder like, "Am I allowed to be this happy," or "am I allowed to not be happy because there's so much grief in their lives?" So it's hard. I feel this tension often like, I'm not allowed to grieve as much as this mom, but also I better be really, really happy because I'm okay and my baby's okay. It's hard when we compare our emotions to other people's who are going through different things. But it, but it's hard not to wonder, like, "Am I allowed to feel this way?" "Am I supposed to feel this way?" For me, that's when writing is helpful. Just writing down what I feel in great detail helps me move through the feelings, I guess.
Mikkael Sekeres: Part of the processing of it.
You described the code call for your patient vividly. You know, you draw us as readers into your essay and into that moment. We've all been in that moment. I remember when I was just talking to somebody about when I was in the intensive care unit, when I was a resident, and how at that time, a psychiatrist actually met with us every week to help us process what we were seeing in the intensive care unit, which was really remarkably forward thinking for how long ago I trained.
Maggie Cupit-Link: That's really great.
Mikkael Sekeres: How did you process it in real time and afterwards though?
Maggie Cupit-Link: That day, even now, an aspect of me was dreading this conversation because I feel nauseated when I think back to that day, to that code, and I feel like I'm going to cry. And I don't feel like that in every code, but I think it was because of the parallels between the little boy and my baby. To note, my baby, Houston, he is a big, bald, fat faced baby with a binky in his mouth at all times, and Tristan was a fat, bald baby with a binky in his mouth at all times. And so even though there was a bit of an age difference, when I saw Tristan, I just thought of Houston, and I couldn't separate that.
I feel often when I'm doing a lumbar puncture or running a code in real time on a patient, I can sort of dehumanize to the degree that's helpful where I just do what needs to be done and put aside the ick feelings. But with that child, in that code, I couldn't. And luckily I didn't have to do anything but stand there and tell them when to stop or just be supportive, but I felt sick. I felt like I couldn't do anything to help. I didn't feel like a doctor in that moment. I felt like a family member of that child. And that was really difficult.
I was so lucky, and I don't know how much the piece reflects this, but the other doctor who was there, the other oncologist, is a mentor of mine who's older than me and wiser than me and very experienced. And I call her my 'work mom' lovingly. She was there, and she stepped in and helped me and checked on me and made me feel like I could handle things. It would have been much worse without her there.
Mikkael Sekeres: We're fortunate when we do have our friends and colleagues to help process this because if you're not in this field, at that moment it's hard to understand just how deeply we can also feel the pain that our patients are going through.
Maggie Cupit-Link: Absolutely.
Mikkael Sekeres: And I do hope you'll retain that description of Houston for when you give the speech at his wedding because I'm sure he'd appreciate that.
Maggie Cupit-Link: The big fat bald binky baby. Yes. Houston is now in his 'mama phase' where if I'm not holding him at all times, he fake cries, "Mama," until I do pick him up. So it's been exhausting physically, but I must pick him up.
Mikkael Sekeres: I have to say it has been such a pleasure having you, Maggie Cupit-Link, join us to discuss your essay, "Mother's Grief." Thank you so much for submitting your article and for joining us today.
Maggie Cupit-Link: Thank you so much for having me, and thank you for everyone for reading.
Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at asco.org/podcasts.
Until next time, this has been Mikkael Sekeres for JCO's Cancer Stories: The Art of Oncology.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Show Notes:
Like, share and subscribe so you never miss an episode and leave a rating or review.
 
Guest Bio:
Dr Margaret Cupit-Link is an assistant professor of pediatric hematology/oncology at Cardinal Glennon Children's Hospital of St. Louis University.
 
Additional Reading: 
It Mattered Later
Why, God?: Suffering Through Cancer into Faith, by Margaret Carlisle Cupit, et al

Listen now to the latest episode of JCO Cancer Stories: The Art of Oncology, North Star, by Dr Manuela Spadea. As a pediatric oncologist, Spadea shares a luminous, gut-honest reflection that reminds us that beyond protocols and outcomes, the deepest medicine is presence.
TRANSCRIPT
Narrator: North Star, by Manuela Spadea, MD 
Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I am your host, Mikkael Sekeres. I am professor of medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.
What a pleasure it is to have joining us today Manuela Spadea, an assistant professor of pediatrics at the University of Turin in Italy and consultant oncologist at the Regina Margherita Children's Hospital in Turin, Italy. We will discuss her Journal of Clinical Oncology article and second place winner in our Narrative Medicine Contest, "North Star."
At the time of this recording, our guest has no disclosures.
We have agreed to address each other by first names.
Manuela, thank you for contributing to the Journal of Clinical Oncology and to our Narrative Medicine Contest, and especially for joining us to discuss your winning article today.
Manuela Spadea: Hi Mikkael. Thank you for having me today. It is a pleasure and an honor being invited to speak with you.
Mikkael Sekeres: No, the pleasure and honor is mine, I promise. You know, on these podcasts, I often like to ask our guests to tell us something about yourself. Where are you from, and walk us through your career and where you are right now.
Manuela Spadea: Sure. I am from Italy. I work in Turin, where I work as a consultant pediatrician, a consultant oncologist, and also as an assistant professor of pediatrics. So my work is divided in these two duties: clinical duties on one hand and on the other hand, research and also teaching activities.
I was drawn to choose pediatric oncology because this sits at the intersection of science and humanity, in my opinion, of course. I think that in pediatric oncology, we face different and several challenges, so we need to perform at our best in diagnosis, treatment, and whatever. But also, we are asked to not forget being human and to connect always with our children and their families. So it was basically this intersection, this connection between science, research on one hand, and humanity and heart on the other hand that led me to what I am today.
Mikkael Sekeres: It is a fantastic explanation, and it is interesting how you have framed that, that there is an aspect of arts and humanities that you have found in focusing on pediatric hematology oncology. I do think that is more so than what we face in adult oncology.
Manuela Spadea: I think that it is kind of different because if you think about our world and you think about a sentence, just putting the words 'child', 'cancer', and 'death' in the same sentence is very hard to think about. An adult is someone that has already had the chance and the gift to grow up.
Mikkael Sekeres: Huh. It is an interesting perspective on it.
Manuela Spadea: Yeah. A child is someone who is growing up and cancer stays in between his possibility to become an adult or not.
Mikkael Sekeres: So the emotional burden right out of the gate of having a child with cancer and the possibility of death and the reaction to the compromise of a full life and the shortening of a full life automatically invokes that extra step of humanity and arts and how we have to approach a medical situation. I had not heard somebody put that into a concise phrase like that before, but you are absolutely right.
When did you start writing narrative pieces?
Manuela Spadea: I started writing when I was an adolescent, basically. And writing for me was a way to cope with whatever kind of feeling I felt during my life and during what I experienced as a human beforehand. But thereafter, when I became a clinician, writing was a way to cope with difficult shifts or hard nights in which you are asked to make very hard decisions as a clinician.
Mikkael Sekeres: Often, either on this podcast or outside of it, doctors will approach me and want to get into writing and write a piece. And I think what many people do not realize is it is entirely possible later in life to start writing and to be very skilled at it. Many of our authors for JCO's Art of Oncology, though, have been writing their entire lives. It is not like they woke up one morning and decided, "Today I am going to write and I am going to write creatively." We have all been working on it for decades.
Manuela Spadea: Sure.
Mikkael Sekeres: I wonder who are some of your favorite authors or are there writers who have influenced your own writing?
Manuela Spadea: I would go with Paulo Coelho and Alda Merini. The reasons are very different because from Paulo Coelho, I learned how to express life as a journey and how to use and exploit, of course, symbolic images to express what we want to tell to our readers. From Alda Merini, I learned that pain and suffering are worthy of being mentioned and they still deserve a place in our writings. And she taught me how to collocate, how to find the right place and the right words to express pain and suffering that are parts of our life, of course, in pediatric oncology, of course, and are worthy being expressed in a manner that can reach our readers and touch them.
Mikkael Sekeres: Well, as you have beautifully in your essay, I wonder if you could give us an example of a symbolic image.
Manuela Spadea: For example, referring to my essay, "North Star." I chose the North Star because it is a very important image because it recalls to us about being a fixed point in a collapsing world. Basically, it is the world of our children that is collapsing and you are the one who represents this fixed point, this anchor.
Mikkael Sekeres: So in your essay, which our entire editorial staff just loved, you write about, and I am going to quote you to you, which is always a little bit awkward, but here I go. You write about "the unbearable beautiful vulnerability of being a North Star for a child with cancer." And you write, "We never call it that, of course, not in rounds, not in protocols, but that is what we become: a fixed point in a collapsing sky. When nothing else makes sense, when numbers fail and outcomes blur, they look to us, not because we promise survival, but because we promise we won't leave." Wow. I mean, that is an incredible collection of sentences. I wonder, in our relationships with our patients, when does that happen? When do we become a North Star?
Manuela Spadea: I think that we become a North Star when our patients experience our humanity because they can trust us, not only for our degrees or our experience as clinicians, physicians, researcher, whatsoever. They trust us as a North Star when they feel that we are empathetic with them, when they know that we are feeling what they are experiencing. And so they leave their feelings to us, they share their feelings and they begin to connect with us.
Mikkael Sekeres: When does that happen in the timeline of when we meet a patient? Is that something that can happen at our very first meeting where a patient may identify us or a member of our team as their North Star, or is that something that only happens over time as we build trust and build empathy?
Manuela Spadea: It is definitely something that happens over time, day by day. Sometimes, but only occasionally, in my opinion, it can happen on the very first days, for example, the days in which we give them the diagnosis. But these are only small occasions because in the majority of cases, in my experience, the trust is built day by day.
Mikkael Sekeres: There are also times that doesn't happen, though, right? What are those scenarios like when either patients do not need us to be a North Star or when that deep connection never happens?
Manuela Spadea: I think that these are very challenging situations. It can happen when outcomes blur, of course, because sometimes patients are experiencing too much suffering and they cannot share with us because they are not able of sharing with us their feelings. Sometimes it is just because you are not their North Star. Sometimes it is inexplicable, basically. "I do not trust you, not because you are not what I am looking for, but because I do not feel I can trust you. And I do not know how to explain because I cannot trust you."
Mikkael Sekeres: It is interesting. It is complicated to develop that relationship where you become a North Star. It sounds like what you are saying is it is a combination of trust, first and foremost, honesty, attentiveness to a patient's needs, and time.
Manuela Spadea:Sure.
Mikkael Sekeres: In your piece, you write about a couple of patients you have treated, Eva and Cecilia, and you write, "In both Eva's and Cecilia's journeys, I was not the most experienced doctor in the hospital. I wasn't the one who had written the protocol they were enrolled in or published the paper that dramatically shifted their chances. But I was the one who stayed, the one they chose. Incredibly, this is both a gift and a responsibility." There is a lot in those sentences, Manuela. You give patients the agency to identify us as a North Star, not us. Can you talk about that a little bit?
Manuela Spadea: I think that there is a word in pediatric oncology that could be used as recurrent. And this word is 'impossible'. Why I chose this word? Because we live impossible diagnosis. Let's be honest. Impossible diagnosis, impossible suffering, impossible losses. When you face the impossible, being a North Star without being burned out by this, it is accepting that you are going to face uncertainty just being present. Because you are not the one that will change the outcome, or you can't be sure that that child will have the chance to survive. So if you give the possibility to face the uncertainty, being sure that whenever it goes, you can just be present for your patient and remember every day to your patient that you are there for them. So basically you win.
And on the other hand, you also need to protect yourself because being a North Star is a responsibility, as I wrote. And a responsibility can be overwhelming for the one who is responsible for that child. So in that case, the only thing that can protect you is taking the part of being a North Star with boundaries. So you should also try to maintain your objectivity as a clinician and protect that objectivity that allows you to also serve as a good clinician.
Mikkael Sekeres: So I wonder if I could follow up on that a little bit. It is a lot of work to be a North Star, isn't it? I mean, we have to choose our words and our actions so very carefully when we are in a room with a patient and that patient's family. Do you think serving as a North Star contributes to burnout or is it actually the opposite? It keeps our work vibrant and real?
Manuela Spadea: Good question. I think that it is both, indeed. I think that burning out comes not by being a North Star, but by being a North Star in isolation, without caring about yourself, without finding a way to cope with your grief, with your sense of fear because we are human, so it is basically we experience these feelings. I mean, if we do not have a way to cope and to protect our feelings, we can absolutely go into burnout. On the other hand, it can be very important thing for our work because it can give our work the possibility to be vibrant and real because we are allowed to take the journey of our patient in a moment in which their journey is very unbearable. This is also not only a responsibility, but also a very important place that we have in their lives. This is very beautiful for me. This is astonishing because we are allowed to enter our patients' lives in a very difficult moment, and we can walk with them. Basically, being present and walking through what cancer journeys reserve for them.
Mikkael Sekeres: Well, I think that is a lovely place to end our podcast. What a real pleasure it has been to have Manuela Spadea, who is an assistant professor of pediatrics at the University of Turin, Italy, and consultant oncologist at the Regina Margherita Children's Hospital in Turin, Italy, to discuss her essay, "North Star." Manuela, thank you so much for submitting your article both to JCO and to our contest, and for joining us today.
Manuela Spadea: Thank you, Mikkael. It has been an honor to share these stories with you.
Mikkael Sekeres: If you have enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you are looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at asco.org/podcasts.
Until next time, this has been Mikkael Sekeres for JCO Cancer Stories: The Art of Oncology.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Show Notes:
Like, share and subscribe so you never miss an episode and leave a rating or review.


Guest Bio:
Dr Manuela Spadea is an Assistant Professor of Pediatrics at the University of Turin, Italy, and Consultant Oncologist at the Regina Margherita Children's Hospital, in Turin, Italy.