Podcasts about cancer stories

Listen to Journal of Clinical Oncology's Art of Oncology poem, "Transcription: Phone Call, 2018” by Elane Kim, a student at Harvard College. The poem is followed by an interview with Kim and host Dr. Mikkael Sekeres. Kim shares her poem that lingers in the spaces between words; a mother and daughter navigating illness and memory. TRANSCRIPT Narrator: Transcription: Phone Call, 2018, by Elane Kim Spiculated mass, irregular contours. Can you come to translate these words? Something in the lung. Yes, I am eating well.   Birds, green ones, are nesting outside the window. Singing as if they aren't young but dying. Lately, I have been singing.   Since we last spoke, the snow has melted into pearls. Rare and pale, glittering like it's the last time you'll ever see it. Will you come see it?   In Korea, we say magpies bring good luck. I dreamt of one the last night I slept well. Though you are my daughter, I feel like   a child. In our language, the word for cancer comes from the character for mouth. The fruit you bought is too tough to swallow.   The cough is worse in the mornings and after rain. When you were younger, you loved the rain. If I could do anything,   I would like to see the snow. To see it for the first time again, the cold a shivering afterthought.   Time passes in pieces: one appointment, then the next. Monday, can you ask the doctor   about the prescription? Will it be stronger? Every new day is an empty one.   No appetite. No warmth. I hope I did not give you a rotten body, my body. Will I be stronger? I feel   a shattering inside. Hello? You are breaking up. Remember to eat well, daughter.   Remember to call home.   Dr. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. 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. Today we are joined by Elane Kim, a student at Harvard College. In this episode, we will be discussing her Art of Oncology poem, “Transcription: Phone Call 2018.” At the time of this recording, our guest has no disclosures. Elane, what a joy to have you on our podcast. Welcome and thank you for joining us. Elane Kim: Thank you so much for having me - very excited. Dr. Mikkael Sekeres: So am I actually. Elane, I was wondering, I think you may be one of the youngest authors we've accepted a piece from. You had an absolutely gorgeous poem that you submitted to us and we were so thrilled that you chose us for your submission and ultimately that we were able to publish it. Elane Kim: Oh, that's so exciting. Dr. Mikkael Sekeres: So, can we start out with just kind of some general questions about you? Can you tell us about yourself? Where are you from? And walk us through how you reached this point in your career. Elane Kim: I'm originally from California, but I moved to the East Coast for college and I'm also a writer. I love to write fiction and poetry. When I first started writing, I wrote for fun for a really long time, but I started to kind of take it seriously in middle school because I went to this one slam poetry event and I remember I went home and I told my mom, “I am going to be a poet.” And so ever since then, I've been writing poetry and it's been really awesome for me because it's my way of expressing myself and translating my world into words and having a space where I'm able to experiment fearlessly. So I love to write and it's been a journey for me because I started publishing little poems here and there. And now my debut full length is coming out early next year with a small and lovely press. So I'm very excited and also honored to be on this podcast with you. Dr. Mikkael Sekeres: Elane, I can tell you as a parent of a daughter who's a rising senior in college, it's every parent's dream when your child comes home and says, “I want to be a poet.” So the question I wanted to ask is, are you a writer who dipped her toe into medicine or are you an aspiring doctor who dipped her toe into writing? Elane Kim: Oh my gosh, it's hard to say. I really love science, but I also really love writing. So I think maybe it comes from a place of wanting to do both because I also think that, I don't know, I really, really admire doctors for everything they do because from everything I've seen, I feel like medicine is a place where I think you need to have very deep empathy in order to proceed. So I also think writing is a place where you need empathy and so I think maybe a little bit of both. It's sort of hard for me to see which angle. Dr. Mikkael Sekeres: That's okay. You still have a couple years in college and, of course, the rest of your life to figure that out. But I think you're right. We obviously meet a lot of doctors who are writers. That's probably the main phenotype of the sort of person who submits something to the Art of Oncology at JCO. But I've always felt there's a lot of overlap between the two because inherently medicine is about storytelling. A patient comes to us with a story of illness. We tell that story to ourselves, to our colleagues when we're getting consults, and eventually we're trying to find the denouement of that story, where we have an answer for the story of illness. So I think it's great that you're still open to both aspects of this, writing and medicine, and I completely agree with you. I do think there's a lot of overlap between the two. Elane Kim: I think that's really beautiful. Dr. Mikkael Sekeres: Tell us about your journey as a writer then. So you talked about going to a poetry slam, but of course, you had to have gone there with a piece of poetry to participate. So when did you start writing poetry? Elane Kim: I always wrote poetry for fun. I loved making cards and stuff for my parents and my family for every little event. So I was my own like Hallmark factory. So I used to write really silly things and so whenever like people wanted cards or anything, I always had a poem ready. But then I started taking it seriously after this slam poetry event. I feel like slam poetry is very rooted in emotion and performance. And so all the poets there are so awesome and they really like are able to get into character and share their story in a very like raw way, which I thought was so, so awesome. And it was sort of the first time I had seen poetry as less of a vehicle for like a Valentine's Day joke or something and more of an actual story with like a punchline with a lot of character and individuality. And so that was sort of a space where I saw all these poets who were so excited about what they were doing and able to tell a story about something bigger than themselves. And so I think that was kind of a turning point and little middle school me, I was like, “This is totally what I want to do and totally something I want to pursue.” And although I no longer am like strictly in the spoken word space, I still think every single poem should be read aloud and should be shared with people in a space where everyone's listening and everyone's able to gain something new from it. Dr. Mikkael Sekeres: It's beautifully stated. And you know, that notion of reading words aloud is so important and that's advice that I give to some of my mentees even in scientific writing. As they're moving along, I'll actually say to them, “Okay, now read that paragraph or those sentences out loud and tell me if they make sense.” And as they're reading them, they'll often realize, “Wait a second, it's constructed the wrong way. And I'm burying the lead or the grammar doesn't quite work out.” And they rewrite it. So I love the fact that you talk about writing as something that should be read out loud. I think that's true whether you're writing creatively with poems or narrative pieces or even in scientific writing. Can you tell us what prompted you to write “Transcription: Phone Call 2018?” Elane Kim: Kind of like the title suggests, I wrote this poem after I had a phone call with a loved one that really stayed with me because I think there were a lot of, I guess, distances that were traversed through that phone call and it was a little bit more about what was left unsaid as opposed to what was said. So the poem is- it kind of addresses this, but there are language barriers, generational gaps, and also like the weight of illness that's bearing on this conversation that sort of bleeds into everyday life. And so I was thinking a little bit about how people can often carry conversations across physical distance and also emotional distance, especially in immigrant families, for example, where a lot of the times communication is something more emotional or cultural rather than something that's, you know, said through sentences. And so I think that the poem is both like a literal transcription of a phone call that's like spliced up, but also maybe like an emotional transcription where we're trying to preserve this moment of love and tenderness between a mother and a daughter. Dr. Mikkael Sekeres: It's really a terrific piece. I keep saying this over and over again. You captured so much in so few words, which of course, is the goal of poetry. One of the things that I loved about your poem is how you captured the fractured nature of phone calls, particularly if you're hearing bits and pieces on either side of the phone call. You start the poem focusing on otherness. I mean, right out of the gates, on being an outsider. Your first line is “Spiculated mass, irregular contours,” which is some of our medical speak. And then the next line immediately says, “Can you translate these words?” You're already saying the person, the character who's speaking that line doesn't get it, right? It doesn't make sense to them. They need help in figuring it out. Can you talk about this from the perspective of coming from another country or culture and as a neophyte to medical terminology? Elane Kim: Definitely. It's so awesome that you're able to notice all these small details and everything. That's so awesome. Dr. Mikkael Sekeres: It's a testimony to your writing. You're a great writer. Elane Kim: That's so kind of you, but I'm very excited to get to talk about all this. Yeah, like you said, there's like an insider/outsider dynamic. I guess as somebody who might be new to this country, there's also somebody who's new to medicine and how there can be a lot of barriers there where if you don't have somebody who's acting as somebody who can be in both worlds at once and translate these things, then you're sort of left in the dark. And I think the role of translator is very important here because you're not totally in one world or the other. You're kind of this floating being who is in charge of traversing both worlds and bringing, in this case, the mother from one to the next. But because of this, I think that sort of suggests that the person who is receiving the phone call is not totally comfortable in one world or the other world. They're sort of playing this mediator role. And I think that also maybe speaks to belonging in this poem as well. Dr. Mikkael Sekeres: Yeah. It really emphasizes how critical it is, particularly with serious diagnoses in medicine like cancer, that people bring with them another set of ears, or sometimes we'll joke and we'll say they bring an ectopic brain with them, someone else who can listen because it's not only the medical terminology that people trip over, but like you say, it's the emotions of the diagnosis and how receptive people are to the information. So they need somebody else there as another source of truth and another advocate to ask the right questions and also make sure that what the patient is hearing is what's being said and vice versa. So, are there poets who've been particular influences on you and if I could ask, who and how? Elane Kim: When I was first starting out, I really appreciated slam poets and I still do. I love slam poets. I remember I would go home and watch YouTube videos like over and over of these poets performing their work. For example, I really love Sarah Kay. I also really love Hieu Minh Nguyen. Both of them, oh my gosh, so, so awesome. And I think they bring a lot of, especially Sarah Kay, she brings a lot of whimsy into her work and also a lot of naturalistic references and also like scientific references that you wouldn't necessarily expect. Like, she has this one poem about these birds called starlings and when they fly together, they fly in the big shape of another starling, which is really fascinating, but also very poetic. I listened to that. I was like, “Wait, that is so awesome that nature knows to do that.” So things like that, I think I take a lot of inspiration from whenever there's something I learn about in, say, like my bio class. I'm like, “Write that down, write that down.” Because I'm like, “Oh, that could be something I put in my next poem.” But I also really love a lot of Asian and Asian American writers who have been big inspirations to me. I really love Jenny Xie. She has a collection called Eye Level, which blows me away every time I see a poem from it. I also love Chen Chen. He has this one poem, “When I Grow Up I Want to Be a List of Further Possibilities,” and I love that poem. It was one of the first poems I really fell in love with. Dr. Mikkael Sekeres: You've given me and our listeners a list of people to look up and to read. It's great. I'm curious about your writing process. What triggers a poem and how do you face the dreaded blank page on your computer? Elane Kim: So the way you avoid that is you never have it for too long. My method of writing, tried and true, is I have this one document where I collect everything and it's like my scraps and even the most random, like, ‘this would never go in a poem' random like throwaway lines, I put them all in one ginormous document. I don't know what I'm going to do if I lose access to it, to be honest, because it's like many, many pages. Basically, I just collect everything there. Like I will be in class and I will hear someone say something that's like just in a conversation, but I'm like, “Wait, that's kind of poetic.” And I write it down or like walking down the street and I'm looking at the water. I'm like, “Huh, that water looks a lot like this.” And I write that down. And so I have this huge, huge running document that has all these random lines. And so for me, I think writing is less about going into a document and like just type, type, type, type. It's more about for me like, how can I take these fragments and put them into a story? Like these random fragments. How can I tell a story out of these pieces that seem disparate initially? For me, I don't have a blank page for too long. My issue is like, how can I make this random mess of words into something that actually tells a story? But I think that's the most fun part of writing also is like putting together this puzzle. Dr. Mikkael Sekeres: I have to say it's also the most fun part of medicine. We're handed chaos in oncology and we're asked to put it together into a story and hopefully a story with a happy ending. So that's great. Elane Kim: I love that. Dr. Mikkael Sekeres: So you're welcome to write that down in your scraps. Elane Kim: Oh my gosh, it's going in there. Dr. Mikkael Sekeres: So, I wanted to end by actually quoting the end of your poem, which was amazing. And the poem reads like this and one of the characters says, “I feel a shattering inside. Hello? You're breaking up. Remember to eat well, daughter. Remember to call home.” And it's a marvelous, marvelously unsettling ending where both the phone call and the character are breaking up, while the character maintains her concern for her daughter. Do you think she's retaining some control of a cancer that obviously has gone beyond her control by expressing her maternal concerns about her daughter's welfare? Elane Kim: Definitely. I think this poem is a lot about how the mother experiences this loss of control. I think there's a moment where the mother and daughter sort of switch roles during the process of her care. She talks about how she starts to feel like a child again or she starts to feel less like a mother and more like the daughter. But I think at the end of the day, the way she expresses her care for her daughter is the way that she always has through like these small gestures. No matter how sick she is, her first concern is always her daughter and whether, you know, she's getting her meals in and just hearing her voice over the phone is something that she looks forward to. And so I think being able to like put somebody else above yourself even when your body is at its most sick is something that, I don't know, I think I find it very sad, but also I think a lot of mothers would also relate to putting your child above other things in moments of illness. And so I think it's a very poignant moment, but also, yeah, one that kind of rings true. Dr. Mikkael Sekeres: It's a poignant moment in an extremely poignant poem and beautifully written. We've been talking to Elane Kim about her poem, “Transcription: Phone Call 2018.” Elane, I want to thank you so much for joining us today. You are so incredibly accomplished and I can't wait to read all of your future pieces as well. Elane Kim: Oh, thank you so much. Narrator: Until next time, thank you for listening to JCO's Cancer Stories, The Art of Oncology. Don't forget to give us a rating or review or follow us and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Until next time, thanks for joining us. 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.   Like, share and subscribe so you never miss an episode and leave a rating or review.  Guest Bio: Elane Kim is a student at Harvard College.  

Jason talks with Amy Brace and Jacquelyn Vranicar about their work on a new documentary that shares breast cancer stories of all different types and stages of breast cancer.

We say thank you to current Cancer Stories host, Dr. Lidia Schapira, and welcome Cancer Stories new host, Dr. Mikkael Sekeres. TRANSCRIPT Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, a Professor of Medicine at Stanford University, and with me today is Dr. Mikkael Sekeres, who is a Professor of Medicine and the Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center in Miami. In this episode, we will be discussing his new role as the host for the JCO Cancer Stories: The Art of Oncology podcast. Mikkael, welcome to our podcast and thank you for joining me today. Dr. Mikkael Sekeres: Lidia, what an absolute delight it is to be here with you. And I have to confess, it's also intimidating to think about taking this over from you, given the amazing job you've done over the past few years. Dr. Lidia Schapira: Well, thank you so much for that. This podcast originated as a bit of a dare. When Steve Cannistra, back in 2017, said ‘no' to some idea that I had for changing or expanding the section and issued the dare of why don't you do a podcast instead? And back in 2017, I had no idea. And we were less used to podcasts, so I trained myself. And then this beautiful new form sort of emerged just from my idea and dream of giving our listeners and our readers something new to chew on and to reflect on. Dr. Mikkael Sekeres: Well, it turned out to be prescient, didn't it? I can't tell you how many people I know, especially here in Miami, where we do tend to get caught in traffic and have a long commute time. I'm sure that never happens to you in Palo Alto. Dr. Lidia Schapira: Of course not. Dr. Mikkael Sekeres: But people listen to a lot of podcasts and it's a great way to catch up on personalities and on books and on the news. So good for you. I'm so happy you took the dare and ran with it. Dr. Lidia Schapira: Yes. And the first thought I had was to make it a bit artsy. So we started, for the first couple of years of rounding up everybody we knew who was an actor or had a voice that they used for their art or trade and asked them to read the essays or poems before we had the conversation with the author. Now, we have our own voice actor, so we know what we're going to get every week, and we're not looking for people and knocking on doors and asking very busy actors to donate their time. So it has evolved, as has the writing really. So I wondered if you can reflect a little bit on how you see this section both in the journal and also the conversations we're having in this podcast change and evolve over the years. Dr. Mikkael Sekeres: Let's be honest, we're both writers, right? So as a writer, you're always looking for an outlet for your work. And there aren't a lot of outlets in medical journals. Yet there's this huge audience of doctors and nurses and pharmacists and social workers who read these journals and have this incredible experience with this deluge of humanity we see every single day. So this is an incredible thing, that Art of Oncology was even created a couple decades ago and provided this outlet for people. And what I have noticed is that people have become more daring. So let's play on the dare that you took up to even start this podcast. They've become more daring in what they're willing to write about and in how vulnerable they're willing to be in print. I've seen this in my own career, in my own writing, where 20 years ago I came out of fellowship and very cautiously started to write about some of the experiences that I had. But it was cautious and used more professional language and didn't get into some of the vulnerabilities that we face in treating patients and that we experience in ourselves and in our colleagues. But I think people have been willing to share more of themselves, particularly in the last decade. Dr. Lidia Schapira: I totally agree with you. And one of the things that I've noticed is that we have younger writers and younger authors who are now taught, even during their medical training and postgraduate work, that writing as a way of processing emotionally difficult experiences or sharing interesting thoughts or coming together as a community is really important to create the kind of community of thoughtful practitioners that we need to sustain us while we do this difficult work. So we are having more and more submissions and published work from very young colleagues, trainees. And I find it very interesting, sort of this multi-generational way of expressing the contact with very ill patients and sometimes very moving to think back on the first time you gave bad news for those of us who may have done it a hundred thousand times. Dr. Mikkael Sekeres: So I think you're spot on about this. We're getting younger authors. We're getting folks who are early career, mid career. Now, we're receiving essays from folks who are at the end of their career and want to reflect on that career. And people we wouldn't have expected would write these vulnerable essays either. I wonder if some of the pieces we're getting from younger authors stems from the fact that fellowship programs are finally paying attention to the experience of being a fellow and being a trainee. Dr. Lidia Schapira: Oh, my goodness. It was staring at them all this time. I think when you were a fellow a long time ago, you were one of the advocates of having fellows talk to one another about their experience, right? Dr. Mikkael Sekeres: You have an incredible memory. During our fellowship, we started a Balint Physician Awareness Group. So there's this movement started by the Ballint, a husband and wife team to start to get healthcare providers to reflect on their experience and share that experience with each other to build a community of support. And we started this in our fellowship. And you can imagine the initial reaction to this among the fellowship directors was, “Why do you need that? What do you think you're doing? There's no place for that.” Dr. Lidia Schapira: “And we need our time to train them on the science.” This is maybe an extra. Right? I think many of us have felt that trying to advance anything that deals with humanism or the human side of providing care is considered maybe optional. And I think you and I have been pushing against that for a long time. Dr. Mikkael Sekeres: I think that's exactly right. What I think legitimized it a little bit is we got funding for it from The Schwartz Foundation. We then actually published a study looking at it in JCO because the fellows in our program spent time at two different hospitals. So it was by design, this crossover study where half the fellows got the intervention of the Balint group and half didn't. And it turns out, lo and behold, they actually felt better and had a better experience as a fellow when they had the intervention. Dr. Lidia Schapira: Yeah. It's so interesting that we had to turn it into a randomized control trial or whatever design you picked, but you needed to fit it into the section of the journal that respected the logic and process of scientific research. But that brings me to another point, I think, that we have talked about so much, but I think it's important for us to share with listeners. And that is that the section of the journal that we've created now, it used to be When the Tumor Is Not the Target, and we've shortened the title. The Art of Oncology is not a section for papers that address research or where there is no methods and results section. It is intentionally meant to be different from the rest of the journal. Is that how you see it, too? Dr. Mikkael Sekeres: Oh, my word. Absolutely. And our reviewers occasionally will have a submission that is more of a classic article in how it's structured, and our reviewers will push against it. And sometimes we're able to get back to the author and say, could you write this in a different way, something that's more reflective of Art of Oncology? I think it's meant to be, I don't want to say a break from the way other articles are written, but maybe a different style, a different way of using your brain and reading these articles. And we've seen that they're popular. Sometimes they are the most read article, even in JCO, in a given week, which, of course, we share with each other and gloat a little bit when that happens. Dr. Lidia Schapira: Yes, and it doesn't have to be the article that made you cry. It can also be the article that made you think. That's been my intention as the editor for this section for the last 10 years. I've tried to be very intentional instead of bringing to our readership articles that delve into different parts of this lived experience of giving care. Some are moving more towards ethical conflicts. Some are moving more towards the emotional labor of the work. But some bring out different voices and different perspectives. And I'm proud to say that the submissions we get really come from all over the world. So I wonder, Mikkael, as you're entering into this role now, your decade as editor for this section and host for our podcast is how you view the editorial process. How does your team help the authors bring their best article forward? Dr. Mikkael Sekeres: I took the lead from you, and I'm not saying that just to blow wind in your sail, but you have always given feedback to authors, whether it's a request for a revision and acceptance or turning a piece down. That's been helpful, that's been thoughtful, that's been empathic. And in the end, I know that your goal has always been with these reviews, to give the author advice moving forward. I've tried to take a page out of your book by doing that as well. I go into every piece you shared with me that you do the same thing. When I get a submission, I look at it and I'm so excited about what could be there, what truth this could reveal, what angle of thinking about something that I've never thought about before. And our reviewers go into it the same way as well. These are folks who have read hundreds, if not thousands of essays. They themselves are readers. They're writers. They've had submissions accepted to Art of Oncology. They're looking for pieces that reflect a great truth that we all realize sometimes it's a great truth that no one wants to talk about, and this is the first time somebody's talking about it. Those are the best pieces. When you read it and say, “I thought the same thing,” Or, “I had the exact same experience and no one's ever talked about it before.” We're looking for good writing. We're looking for pieces that are focused on a patient. And you and I have both given talks on narrative medicine. And one of the slides I have in my talk is to remind people that the patient is the most important person in the room and to make that piece focused on the patient's experience and, of course, the writer's reaction to that experience. But in the end, it's all about our patients and their experience. And we're looking for, as you mentioned, perspectives that we haven't seen before. So we want to hear from people who are in training. We want to hear from people in different stages of their careers, people who practice in different settings, people who bring different cultural backgrounds to their own perspective on the practice of oncology. Dr. Lidia Schapira: And if I may point something out to our listeners, you are an artist in being able to bring the bedside verbatims to the page and make them live. I've always admired that in your writing, Mikkael. Can you tell us a little bit about your process for writing and how the role of the editor varies or is different from the role of the writer? Because I've learned a lot about editing, and I think the editor is an interpreter, in a way. I'm fascinated. I was brought up in a household where we spoke four languages, and I was always fascinated by trying to find the right word in a language and struggling with all of that. And I think some of my love for editing, which is different from my love for writing or reading, comes from that, from trying just to find the right word or trying to respect the voice of the author and make it even better or more artistic. Can you tell us a little bit about your process and your relationship to language and writing and editing? Dr. Mikkael Sekeres: It's great to hear you come from a family where you spoke four languages. I am an unfortunate monoglot. I'm terrible with foreign languages. But I come from a family of English majors. My dad was a journalist for the Providence Journal in Rhode island, then an editor for 10 years. My mom was an English major as well. So I always think that as parents, our job is to impart one employable skill to our kids so they don't live in our basement forever. Dr. Lidia Schapira: That's what my father thought, and that's why I'm a doctor and not a philosopher. Dr. Mikkael Sekeres: We joke that we moved to Miami, so there is no basement they can live in. But I always felt in my family, the employable skill was writing. I grew up and when I went to med school, I think, we put on this armor of the language we're learning, and we're very uncomfortable and nervous about the skills that we have. So we use this language to separate ourselves from our uncertainty around medicine. I distinctly remember at one point talking to my parents and saying something that was very complex, using medicalese. And they said to me, “Why are you talking to us like this? We're your parents. You don't have to use that language. Just use language we can understand.” And that always resonated with me. That was kind of a North Star moment for me. That's what's guided my writing. And I have so much respect for the words that my patients use. And I think that's why I try to incorporate it in my essays as well. I always try to have my patient's voice literally there in their words as a focal point. I think as an editor, we go into a piece and we want to learn something. In the end, essays either educate or entertain, and ideally both. So we want to come out of a piece, we want to be either emotionally moved or we want to learn something and hopefully both things. And if I'm reading a piece as an editor and one of those two criteria have been satisfied, then I think it's a piece that's worth giving feedback to and advising revision. But I'm curious. I want to turn this a little bit, Lidia, because you're the one who always asks the questions. Dr. Lidia Schapira: I love asking questions. Dr. Mikkael Sekeres: So I'd like to ask you a question. When did you get started as a writer and a reader? And has that interest and skill changed over the course of your career? Dr. Lidia Schapira: Yes, I must say, I've always been a reader. That's my idea of heaven is a place with an enormous amount of books and a good espresso machine, just to give you an idea. So books have always provided companionship to me. They've provided community. I'm very happy living in a world of ideas, and I love art, and I love the sound of words and beautiful words put together beautifully. So that's basically reading and thinking, to me, are very closely aligned. And I also love and come from a culture, a society where conversation was valued. And I'm very sad that we don't anymore. We don't converse in our typical academic settings because we're so busy, and our language is mostly turned into units of efficiency. So I love the idea of communicating through language. Words, spoken words, things we listen to, things we read, things we write. My relationship to writing has been very undisciplined and inconsistent. And for all the years that I was an editor for this section, I found myself sort of inhibited from writing. And from the moment that I passed the baton on to you, I've been gushing. So I'm working on a book, and hopefully it'll be the first of several. But I've sort of kept my writing very private, and I've only been able to do it when I have a lot of time and no pressure. I'm not the kind of disciplined writer who can set aside time every day to write. I just can't do that. I need to be totally empty and free and be able to disagree with myself and erase a thousand words written on a page because they're just not good enough and start again. Dr. Mikkael Sekeres: I'm fascinated by that comment that you just made. What is it about being an editor that you feel has inhibited you from writing? Dr. Lidia Schapira: I think I was just busy. I was busy, again, immersing myself in the words that I needed to respond to and in the creative process of transforming essays into their best possible publishable form. And I think that's how I've interpreted the work of editors. I have tremendous respect for editors. I now need one to help me with my own work. But I think editors play an incredible role. And I am very happy that you view this role as something that is joyful. And I know that you have the amazing talent to do it. So I'm just very happy that we've made this transition. Dr. Mikkael Sekeres: Can I suggest that you've been giving as an editor also, because I think that your guidance to authors is precious? It's so valuable. Writers are so desperate to have that kind of caring advice. And I wonder if you've devoted all of your creative juices to doing that for the past 10 years at the expense of not being able to write yourself. So I'm so thrilled that you have the opportunity now. I will be the first person to buy your book, to write a review for your book. I can't wait to read it. Dr. Lidia Schapira: We've got a blurber. So now I need a good editor and a therapist, and I'm on my way. So on that note, I think it's time for us to end this lovely conversation, although we could go on for a long time. For our listeners. I want to thank you for having listened to me all these years, and I'm delighted that Dr. Sekeres will continue this wonderful program. And I look forward to listening while I drive, while I walk, and while I just simply am. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. And thank you Mikkael. Dr. Mikkael Sekeres: Thank you so much, Lidia.   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.   Like, share and subscribe so you never miss an episode and leave a rating or review.   Guest Bio: Dr. Mikkael Sekeres is a Professor of Medicine and the Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center in Miami.  

Challenges are what makes life interesting, overcoming them is what makes life meaningful.What role does our mindset play as we navigate through the adversity and challenges that transitions bring to us?My guest, Terry Tucker is someone who has experienced and continues to walk through the adversities and challenges in life and is here to share his powerful tools and truths on mindset, motivation, and self-development.Terry is a Speaker, Author, and International Podcast Guest, SWAT Team Negotiator, and for the past 12 years, a cancer warrior.His story of resilience and hope will inspire you!In today's episode, Terry shares his personal battles along with his 4 Truths to encourage, guide, and support.Control your mind, or it will control youEmbrace the pain and discomfort we all experience in life and use it to make you a stronger and more resilient individual.You leave behind what you weave in other people's hearts.As long as you don't quit, you can't be defeated.  Terry is the Author of Sustainable Excellence: Ten Principles to Leading your Uncommon and Extraordinary Life. Co-author of Perspectives on Cancer: Stories of Healing, Hope and Resilience. Connect with Terry:Motivational Check Website: https://www.motivationalcheck.com/ LinkedIn: https://www.linkedin.com/in/terry-tucker-9b5605179/Facebook: https://www.facebook.com/Motivationalcheck X (Twitter) https://mobile.twitter.com/terrytucker2012Instagram: https://www.instagram.com/sustainableexcellenceauthor/ CONNECT WITH DEBIDo you feel stuck?  Do you sense it's time for a change but unsure where to start or how to move forward?  Schedule a clarity call!Free Clarity Call: https://calendly.com/debironca/free-clarity-callWebsite – https://www.debironca.comInstagram - @debironcaEmail – info@debironca.comCheck out my online course!                                                                                                                                                                                                                                                                                    Your Story's Changing, finding Purpose in Life's Transitionshttps://course.sequoiatransitioncoaching.com/8-week-programThe Family Letter by Debi Ronca – International Best Sellerhttps://www.amazon.com/dp/B07SSJFXBD

In this heartfelt episode of Conversations with Rich Bennett, Rich celebrates 10 years of podcasting and revisits his very first episode with an inspiring conversation featuring Pam Winnie, Delmonica Cobb, and Jodi Gonzales. The guests share their powerful stories as breast cancer survivors and advocates, highlighting their journeys of resilience, healing, and giving back.Pam discusses how her battle with breast cancer led her to become a paramedical tattoo artist, helping survivors regain confidence through her artistry. Delmonica explains the transformative role of lymphatic massage in recovery and emphasizes the healing power of touch. Jodi shares her personal story of navigating treatment with creativity and humor while staying deeply connected to her community.Together, they stress the importance of early detection, the value of emotional and physical support, and the impact of community-focused initiatives. This episode is a tribute to strength, compassion, and the enduring spirit of those touched by breast cancer.Send us a textSupport the showFollow the Conversations with Rich Bennett podcast on Social Media:Facebook – Conversations with Rich Bennett & Harford County LivingFacebook Group (Join the conversation) – Conversations with Rich Bennett podcast group | FacebookTwitter – Conversations with Rich Bennett & Harford County LivingInstagram – Harford County LivingTikTok – CWRB (@conversationsrichbennett) | TikTok Sponsors, Affiliates, and ways we pay the bills:Recorded at the Freedom Federal Credit Union StudiosHosted on BuzzsproutRocketbookSquadCast Contests & Giveaways Subscribe by Email ...

Ahead of World Cancer Day on 4 February and the new campaign, ‘United by Unique,' focusing on people-centred care, this episode of Let's Talk Cancer highlights "Rewriting Cancer," a series of short films produced by BBC StoryWorks Commercial Productions for UICC. These films feature the experiences of people with cancer, their loved ones, caregivers, medical professionals, and volunteers worldwide. The series aims to dispel myths and highlight advancements in cancer prevention, diagnosis, treatment, and supportive care. With Gemma Jennings, Vice President at BBC StoryWorks, and James Waddington from the American Cancer Society, a prostate cancer survivor and advocate for early screening. Hosted on Acast. See acast.com/privacy for more information.

Listen to ASCO's Journal of Clinical Oncology Art of Oncology poem, "Episteme” by Dr. Michael Slade, who is a medical oncologist at Washington University School of Medicine. The poem is followed by an interview with Slade and host Dr. Lidia Schapira. Dr Slade highlights the tension between what is known and unknown and what spoken and unspoken as physicians try to care for our patients without destroying their ability to live with their disease. TRANSCRIPT Narrator: Episteme, by Michael J. Slade, MD, MSCI  I know you know, must know. The tides have woken you night after night after night, borrowed blood flowing in and now out, unaided by your dwindling marrow. You must know your story is read and written in a perfecta tense. You must know the end somewhere deep in your empty bones.   Still, you speak of summers, of fish caught or lost beneath the calm surface of a distant lake. “There's nothing to do in December,” you say, skin pale in the cool light leaking from the door. It's late now, deep in the evening and my knees ache as I nod and wonder about a different world where you were not you and this was all decided months ago.   “Day by day,” I mutter and shuffle to my next door, leaving you alone to wait on the cataclysm, on that night when the blood of strangers runs wild and catches your breath, that night in the ICU, where they wait, tube in hand as you sweat and shake, where I still promise to care for you knowing, knowing you will never wake again. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Michael Slade, a Medical Oncologist at Washington University School of Medicine. In this episode, we will be discussing his Art of Oncology poem, “Episteme.”  Our guest's disclosures will be linked in the transcript.  Mike, welcome to our podcast and thank you for joining us. Dr. Michael Slade: Thank you, Lidia. It's great to be here. Dr. Lidia Schapira: It's a pleasure to have you. Let's start by talking a little bit about your relationship to writing prose, poetry. Is this something that you've always done? Do you want to share with us a little bit about what it means to you and when you have time to write? Dr. Michael Slade: I'd say, I have absolutely no formal training as a poet or honestly in anything else, but this is something I've done since college. And especially starting in medical school, this was really a deliberate practice for me to try to find a way to unload some of the harder experiences that we can go through as medical providers. Dr. Lidia Schapira: It's interesting to hear you say that. Many of our authors have talked about using their writing as a way of processing emotionally difficult experiences and just very important meaningful experiences. But there's so much artistry in your work. I just wanted to ask you a little bit more about that. How do you find the relationship to not just the writing as a way of processing, but as art that you want to share and publish. I've seen that you've published poems, quite a few of them in the last year alone. Dr. Michael Slade: Yeah, I would say the publishing piece of this came very far down the road for me, that I've been writing for over a decade before I think I even submitted anything for publication. And for me, the ability to publish is more of a- Is a way of putting yourself out there and as a motivation to really re-examine what you've written and not just scrawl it on a piece of paper and sort of stick it back on a shelf somewhere, but to be able to go back to some of these experiences and really delve a little bit deeper, both with the language, but also what was the experience? Why was this meaningful? And often things that end up in print for me are things that I've been playing with for a number of years. It is just sort of an ability to go deeper there is the reason why I have published some of these works. Dr. Lidia Schapira: I am very interested in the theme of time and your use of pronouns. There's a lot of negotiating. What is yours and what is your patients'? I assume the “I” is the oncologist, right? In this particular case, since the readership of JCO are mostly clinical oncologists, it's sort of meant to be an affiliation with a reader. And there's a lot of “I,” but then there's a lot of mine. Can you talk a little bit about how you have chosen to address the patient directly and your colleagues directly and put yourself out there using first person as well? Dr. Michael Slade: I think certainly, as I wrote this, and I tend to write a lot as I come off of sort of tough stretches of clinical work, and as I wrote this, I think, I was trying to capture a little bit of the anguish that I think a lot of us feel as oncologists, especially around this question of what we know and what is knowledge for the oncologist. The reality is the things that we know sort of above the neck tend to be very statistical, that we say, “Oh, the chances of you responding,” “The chances of you surviving,” “The chances of you being cured,” it's very numbers based, but it's probabilistic. And when we talk to patients and often when we talk to ourselves, we really use this idea of knowing in a very different way, that we know that something's going to happen because of our past experience or because of what we're seeing right in front of us. I think that's something that I think a lot of oncologists probably identify with very closely is that what do we do when we feel like we know something in a way that's almost deeper than the academic way that we speak of knowing. Dr. Lidia Schapira: Let's talk about that. And that is, in fact, the title you chose for your poem. Why not just use the word knowledge? Tell us a little bit about that choice. Dr. Michael Slade” When we talked about knowing, both academically and my background before I came to medicine, as I trained in philosophy, we talked about epistemology or episteme. Often, we talk about knowing both in medicine and in sort of the wider philosophical discussions, we talk about it in this very abstract way that if you were to sit down with a patient and really try to unpack it, they're not going to have any idea. This isn't relevant to practical life in a lot of ways. They want to know, “Am I going to be cured?” “Am I going to have this side effect?” “Am I going to make it out of the hospital?” And the type of knowing that we do within science is not that type of knowing. It's all probabilistic. And to me, I think, trying to pull back a little bit, and by using the sort of Greek root, it sort of places this idea of knowledge at a remove that I think is useful. Dr. Lidia Schapira: Mike, I've often used the analogy that poetry is almost like abstract art sometimes, because it invites the reader to imagine things. So if we think of this poem sort of as art, can we walk through this together and take it from the top and see what we see or what these ideas trigger? You start directly by addressing the I know, you know, you must know. And then you present the case, if I got this right, of somebody with a dwindling marrow, that's an empty bone, so an inefficient marrow. And I assume, since you're a bone marrow transplanter, that means this patient had a disease that was incurable here, and you sort of insist that you must know. Tell me a little bit about that tension, that emotional tension that comes up for me as I read that, those opening lines where you're sort of insisting that you must know something that you're not sharing with me that you know. Dr. Michael Slade: I think for me, that's really trying to express the gap that can emerge between those of us who do this professionally and our patients who have to live through these experiences. And we can say, “I have seen this story play out so many times, and I know things are not going well. I know how this is going to end.” But for the patient, this is, obviously, every patient is an n-of-1 with their own experience, and they may have had family members with similar diseases, they may have had friends. They may join these really wonderful patient support groups where people can sort of talk about what the process of cancer treatment is. But for the patient, they are living through it day to day. And we may feel with our accumulated knowledge that it's very clear how things are going and that either their optimism or pessimism or sort of whatever the patient's base emotional reaction is to the clinical situation is fundamentally incorrect. It's like you have to put these pieces together in the way that I do. And the reality is that there is a huge gap that can emerge between us and our patients, and it can lead to frustration and anguish and a lot of negative emotions, I think, from clinicians that aren't aimed at the patient, but they're really aimed at the fact that we feel like we're not talking about the same situation. I think that's what that first piece of the poem is really trying to capture, is that anguish at that type of gap. Dr. Lidia Schapira: And you say it very clearly. You say, “You must know your story is read and written in the perfect tense.” It's almost like you're shouting it here, right? Dr. Michael Slade: But in sort of a weird, obscure way that if you tried to tell a patient sort of a grammatical metaphor for how poorly their hospitalization was going. Most patients, unless they're English literature professors, will look at you as sort of with this, “What are you talking about?” I think, again, it's that gap. It's this very academic, removed way that we often look at this, especially when we're trying to shield ourselves from this very human anguish of knowing that there's this real person in front of you who's not doing well and that you feel like you kind of know how the story is going to end. Dr. Lidia Schapira: Let's go a little deeper into that then. It's really about your feelings then here. It's your frustration. You want the patient to mirror back to you that they get how bad this is, and they can't because they are trapped in that body, in that situation. And as you just say, and then you say in the lines that follow, “they are coming up for air.” They're thinking of the summer and the fish that may be caught or not caught. They may know it somewhere, but they can't quite recite that back to you. And that leads the writer, the author, to voice this inner tension. Did I get that right? Dr. Michael Slade: I think that's exactly it. And sort of towards the end of that verse, there's also sort of this counterfactual that certainly different choices can always be made in the course of treatment. And especially for us clinicians when we're encountering a patient who interprets their disease a little bit differently than we do, and they say, “Oh, I feel fine. Why do I need chemo after surgery?” Or, “Oh, I feel fine. Why do I need a bone marrow transplant?” And sometimes people will make choices which makes their immediate life better, but we are always stuck in this sort of feeling of, “Oh, man. If only we had done things a little bit differently.” I acknowledge that we just can't align our views of the world, but still at the same time saying, “Well, I don't know, things would have been better if you'd listened to me. Maybe you made the right choice for you and your disease process.” So it's always that gap between what we know academically and what we sort of know below the neck. And then for patients, their experience is often very different from ours because they have to live through this. Dr. Lidia Schapira: I'm interested in the physician narrator experience here, and I was really impressed by the fact that you convey the tension on the emotional load. But the only thing that you write and communicate directly to the reader is the physical aching, when you say, “it's the evening and my knees ache,” and then you say “I shuffle,” suggesting that you're physically tired. I just wonder if you could talk a little bit more about that, the way that you have inserted the fatigue factor of the narrator here, but through the description of physical symptoms. Dr. Michael Slade: I think there's a little bit of blending there, because I think on the one hand, certainly this emotional anguish, mental anguish can certainly manifest as fatigue, and sometimes can be sort of a little bit of a metaphorical blend there. But I think the other thing that we often really struggle with as physicians and as other providers is how much are we letting ourselves get into the story that the patient is experiencing, but even the story that we're trying to objectively put together. And because, for example, we had a patient who tried a treatment and they had a rare side effect, a lot of us will admit, “Hey, I had a patient with a bad outcome when they got X,Y,Z.” Even if the data looks really good because of my own emotional processing or I do my best. And I know a lot of other physicians talk about this, but if you are tired, hungry, under or over caffeinated, having bad things going at home a lot of times for us, we worry about letting our personal lives bleed into our interactions with patients. And that's really challenging because I think we are at our best when we bring our humanness into the clinic room, into the hospital room. We also have to make sure that we're not saying, “Oh, am I just down because I'm tired, and that's why I think this patient's going to do poorly?” Or is it actually supported by the evidence in front of us? So I think the way that the narrator kind of moves in and out of this piece and how much they are a part of the story is a big piece of the poem. Dr. Lidia Schapira: It is a very big piece of the poem. And as I read some of the other poems you've written, I think that I was also impressed by this construction of the boundaries and the separateness between the patient and the physician narrator and how you negotiate that when you're waiting for a result, when you're waiting for time, when you say it's really the patient's story, but it's yours too. There's a fluidity about this perspective. Did I get that right? Dr. Michael Slade: I think that's an absolutely wonderful way to describe it. I think fluidity in particular is, yeah, that we think of things as very separate from each other and that I'm me and you're you and there's your family and there's the rest of the team. But all of this stuff, not to get too sort of hippie with it, but there's so much resonance when you're in these relationships that you have with patients. And especially in cancer care, we have very deep, often very prolonged and somewhat intense relationships with patients and their families as they go through this stuff. Boundaries can become blurred. And again, I think it's challenging because sometimes we are at our best when we blur those boundaries a little bit. But there's certainly- you can be pulled into a patient's story in a way that is not helpful for you long term, but even not helpful for the patient short term. And I think that's the challenge. And you're right. I spend a lot of my work sort of thinking about this. And a lot of my professional life is also thinking about this. Dr. Lidia Schapira: I would say it a little differently. And it's that you are co-constructing an ‘us' that is between you and they, or you and he or she, or however you see this. And that's the mind part. Others have talked about cases where there is a deep connection between physician and patient, where the physician is invited to be a co-editor of that patient narrative. I think there's a lot of richness in that. And I think that your work and your poetry certainly takes us right there.  And so with that, I want to take us to the end of the poem, which is terrifying.There's going to be, you use the word ‘cataclysmic', which means, this is an upheaval, something violent about to happen. And the way I interpret it is your patient is neutropenic and septic and shaking and rigoring and is getting transfused. And the “They,” which isn't you or your team, it's the ‘they' are waiting for it too and going into probably an intubation in the ICU. And then there's this promise that you won't abandon the patient while ‘they' are going to be doing these things. And we already know how this story is going to end. Is that what you are trying to convey? Dr. Michael Slade: It's funny because until you sort of read it out, I was like, I didn't realize how much I threw our ICU colleagues under the bus as part of this poem. So if any of you guys are listening, I have immense respect and value for what you do. But no, and this is sort of the big question that we run into with these patients and what's the right response when we feel like we can see the future and then we turn out to be correct. How do we not, I guess, insulate ourselves from that in a way that's not helpful for us and it's not helpful for the patient? And yeah, so that's sort of, as I said, you read the story sort of as it was laid down, but yeah. What do you do? What's the right response when you feel like you're getting to the end and that you feel like you've seen it coming for weeks? And I think that's really the challenge. And the poem sort of suggests an answer to that question. But I think everybody kind of has their own process that they have to go through. As you see, unfortunately, as an oncologist, case after case of folks that- cancer is tough and our treatments are getting better, but I'm a myeloma physician. I have cured zero patients so far. And that's hard at the end of the story. It's always hard. Dr. Lidia Schapira: It is hard. Can you tell us a little bit about your choice of language and why you keep repeating the ‘knowing' and then italicize it at the end, just to add another dimension of emphasis there? Dr. Michael Slade: As someone who loves language and has always been interested in it from a philosophical perspective, but literary perspective as well, there's really, really sharp limitations to what language can express. And we can unpack and define and redefine and suggest. But there's something- often, we in these situations, run up into a place where words are totally insufficient. And I feel like often what we end up doing and what I end up doing in writing but I think even in our interactions with people, we just sort of use the same words over and over again, hoping that somehow the meaning will morph mid-interaction and suddenly we'll have that connection with someone where they'll hear what we're trying to say. And for me, I kept coming back to this idea of knowing, knowing, knowing. The narrator's trying to express something that they just can't quite get their arms around. And I think the best and the closest I can get to in similar situations is something like this, is trying to write out these experiences in a way that kind of captures that feeling. I hope I at least captured a piece of it. Dr. Lidia Schapira: Certainly. I loved your writing and I think you did. Despite how difficult it is to talk about this and how difficult it must have been for you to live through it, there's a real gentleness about the way you take the reader through this. And it evolves. Really, it flows beautifully. So thank you for that. Dr. Michael Slade: I very much appreciate the writing. And I will say to the folks who read the original version of this poem, both in my personal life and then at JCO, this is not the original form the poem was in. So I think other people have layered in their experiences here. And again, I love to see this come out on the other end and say, this is more beautiful than what I started with. So I have a lot of gratitude to folks who have given me some pointers about how to improve this. Dr. Lidia Schapira: It's lovely to hear you say that. To end this, I would love to hear you tell me a little bit about comments, perhaps, that colleagues or even patients may have made based on work that you've published or what you hope that people will take away from this. Dr. Michael Slade: I had published maybe one poem back in medical school, and then I published something as a fellow. And I remember in our program, we have this big office and we basically all have cubicles, and we have sort of the computers all set up, and we're in and out, you know, seeing consults and everything else. And I had published something in JCO a few years ago, that was about indirectly the experience of trying to be on call and triage patients and all this. I had maybe three or four different fellows within the week that that was published, sort of stick their head over and be like, “I never read poetry, but I saw your name on this. So I flipped to the back of the JCO magazine and read it.” And that captured so many of the feelings that I've had this year in a way that I couldn't put on paper. Again, I've been writing stuff since college and most of it sits in a folder somewhere and it's never read by anybody. So the idea that it could go out into the world and could make people have that sort of sense of catharsis that I'm not alone in this. Somebody else has had this experience and had this feeling.  I've had that same experience with some of my very brilliant colleagues who paint or who participate in other sorts of artistic endeavors. And it's nice to know that there's a community of people out here. We're all just trying to navigate the same stuff. And if we can sort of help each other, if we can capture these experiences and retranslate them in a way that people can process their own, sometimes, grief. I think it's really wonderful. Dr. Lidia Schapira: Yes. To create a thoughtful community and accompany one another. Well, thank you for sharing your art and your wisdom and your knowing with us today, and please keep writing.  And for our listeners, until next time, thank you for listening to JCO's Cancer Stories, the Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. 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.   Like, share and subscribe so you never miss an episode and leave a rating or review.   Guest Bio: Dr. Michael Slade is a Medical Oncologist at Washington University School of Medicine.

In this episode, I've curated a special playlist of podcast episodes for Breast Cancer Awareness Month. I believe that sharing stories and experiences can provide emotional support and inspiration for individuals battling breast cancer. We'll discuss the significance of certain stories, and how listening to others' experiences can help people cope with the challenges of this disease. Join me for a thoughtful and uplifting conversation about the power of human connection and its role in healing.   Breast Cancer Playlist: Ep. 17 - Anande Lewis Ep. 21 - Amber Wright Ep. 24 - Anchal Sharma Ep. 26 - Samantha Harris Ep. 32 - Toral Shah Ep. 41 - Mindy Miller Ep. 47 - Lauren Tarpley Ep. 48 - Christine Handy Ep. 50 - Helen Beeley Ep. 58 - Chloë Crampton   Immortalize your voice by being an ALL TALK ONCOLOGY GUEST! Just fill-out this FORM. FREE WEBINAR: https://www.alltalkoncology.com/webinar HELPFUL LINKS: If you want to seek our help, join our "I Have Cancer, Am I Going To Die?" program. Cancer Mindset Mini-Course: "It Starts With Your Mind". 5 Stage Of Winning Against My Cancer Diagnosis E-Book. Claim your Digital Copy Now! SOCIAL MEDIA LINKS: All Talk Oncology: Instagram & Facebook Your Cancer Guy: Instagram WEBSITE: https://www.alltalkoncology.com

It's (still) Breast Cancer Awareness Month, so I am sharing some more insights from the trenches. There are a few difficult scenarios that play out when a patient has breast cancer. Navigating them requires a very careful hand. SPONSORS: Teshuva Wellness is our sponsor for this episode. Visit them at www.teshuvawellnessja.com. CONTACT DR. ANDRE: Send us a WhatsApp message or voice note at +1 (876) 405-7831 or send an email to forpodcast.y8rf3@passmail.net BOOK A CONSULTATION: www.teshuvawellnessja.com/consultation SOCIAL MEDIA: @wellnessdocjamaica RECOMMENDED READING: Tripping over the Truth by Travis Kristofferson ⁠⁠ (please note that some of these are Amazon affiliate links, so we make a few cents from every purchase.) The Healthy Reasonings Podcast is a production of Lot 390 Publishing (JACAP). Copyright©2024. All Rights Reserved.

Listen to ASCO's Journal of Clinical Oncology article, "Scotch and Pizza” by Dr. Paul Jansson, who is an Emergency and Critical Care Physician at the Brigham and Women's Hospital. The article is followed by an interview with Jansson and host Dr. Lidia Schapira. Dr Jansson share his perspective as a critical care physician and how one question can serve many purposes all at once. TRANSCRIPT Narrator: Scotch and Pizza, by Paul S. Jansson, MD, MS  “Would you tell me about J?,” I asked. What was she like? I made eye contact with one of her sons, who looked back at me, somewhat puzzled.  “You mean her illness?” he asked, quizzically. Immediately, I worried that I had lost the family, all sitting shoulder-to-shoulder in the cloistered conference room. No, I responded, can you tell me about J before the illness? What was she like? J came to the intensive care unit (ICU) in the early hours of the morning, only a few hours after making her way from the emergency department to the oncology ward. Admitted with a diagnosis of failure to thrive and dehydration, her CT scans made clear the extent of her cancer's spread. Over the last few months, she had shown remarkable improvement with each serial round of palliative chemotherapy, beating the cancer back and holding it at bay, one round at a time, but it had now spread seemingly everywhere, despite medication, despite molecular testing and targeted treatment, and despite her tenacity. Overnight, she became more and more confused, her electrolytes deranged from days of poor oral intake, now admitted to an unfamiliar environment. Her lungs, bearing the brunt of her disease, had further suffered over the week as she aspirated. As her breathing became more labored, a nasal cannula progressed to positive pressure ventilation. By early morning, she was unresponsive, and the early morning phone call to her family had led to a panicked reversal of her Do Not Resuscitate/Do Not Intubate order. And so she came to me, mechanically ventilated, blood pressure supported by an armada of vasopressors, her body failing, which brought us back to that small room. We didn't have the chance to get to know her before she got sick. I looked around the room, meeting their eyes. We only know her like this. What was she like before all of this? In my first months of intern year in the ICU, I had seen this technique used in family meetings. Initially, I adopted it as a matter of routine, copying the methods I had seen used by senior residents and attending physicians. As I came into my own as a physician, developing my own style, I began to see its value. It opened my eyes beyond the Comprehensive Flowsheet and the Results Review spreadsheet that scrolled into infinity. It showed me why I was doing what I was doing and who I was doing it for. “She loved scotch and pizza.” The room was silent, and we looked around. Her oldest daughter, a nurse herself by training, had broken the silence. Together, she clarified. I know it's a weird combination, she said, but she loved scotch and pizza. It must have been something from college. We all glanced around for a moment, making bewildered eye contact, before the entire room broke into laughter.  “She made a mean coleslaw,” volunteered another brother. “And a great hot dog.” “She was a fantastic mother,” reported the next. “She was my soul.” Thus far, her husband had sat quietly in the corner, the face of stoicism. He was a retired physician, a self-described man of few words. A moment of silence as we all looked toward him, across a conference table, barren except for half-used boxes of tissues, surrounded by children on both sides. She was the best thing that could ever happen tome, he continued. Another long pause, until the words spilled forth. When I would leave her to go to work, I felt incomplete. When I returned home, I felt an immense sense of being at peace. When I was with her, I was calm. She made me whole. She was my soul. We sat in silence, the tears welling in my eyes, welling in all our eyes. She was everything that I was not. Kind. Patient. A fantastic cook. We laughed. Then, another long pause as he gathered his thoughts. And now I know what I need to do.  In his stoicism, his silence, his love, he told us what we all needed to hear. As deeply as her loss would rend his soul, there was nothing more that I could do—that anyone could do—to bring back the woman who gave such life, and further treatment would only prolong her suffering. She died that afternoon, surrounded by her family, finally at peace. A chef for the neighborhood. A mother. A friend. A wife. A soulmate. And a lover of scotch and pizza. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Paul Jansson, an Emergency and Critical Care Physician at the Brigham and Women's Hospital and a member of the Harvard Medical School faculty in Boston. In this episode, we'll be discussing his Art of Oncology article, “Scotch and Pizza.”  At the time of this recording, our guest has no disclosures.  Paul, welcome to our podcast, and thank you for joining us. Dr. Paul Jansson: Well, thank you. It's a pleasure to be here with you.  Dr. Lidia Schapira: So first, let me ask a little bit about this essay and about your intended audience. This is a beautiful meditation, I would say, on a family meeting that takes place in the context of somebody with advanced cancer. What led you to write it? What led you to decide to share it, mostly with an oncology readership.  Dr. Paul Jansson: This is a piece that I think wrote itself and it was something that came to me as I couldn't sleep in the hospital call room. I was on call the day after this family meeting and lying in the polyester sheets and listening to the air conditioning rumble, I couldn't sleep. And it just came to me all of a sudden that I had to write it, and I had to write it in this exact way. I was working an overnight shift in the intensive care unit, and at 5:00 a.m. sat down at the computer, and this just all poured out, basically, in the method in which it appears today. I think there were very minor grammatical changes, but it really just came out. It was a story that I feel that I needed to tell. Dr. Lidia Schapira: So why do you think that this meeting and this family impacted you so deeply? I mean, there's a huge emotional connection here, and I introduced you as a critical care doctor, but you sound like a palliative care doctor to me here, sitting with a patient, basically just asking one question and then watching this loving scene unfold. And it struck me that it moved you. Did I get that right? Dr. Paul Jansson: I think you're absolutely right. Brigham and Women's Hospital is the inpatient hospital for the Dana-Farber Cancer Institute in Boston. And so, by its nature, intensive care medicine at Brigham Women's is a lot of oncology care. And so you are absolutely right in that these conversations are very routine for us. But there was something about this family, the connection, that just stuck with me. I think with many of these conversations, it's relatively routine. It's certainly not routine for the families. But as an intensive care specialist, this is a relatively routine conversation. And to get this level of detail and humor and eulogizing on the part of her husband is really quite unusual and was very profound to me, sitting in that moment stuck with me. Dr. Lidia Schapira: I was struck, Paul, by the fact that you asked one question, and immediately they're talking about her in past tense. She was. She loved. She did. Did that strike you in the moment as sort of showing that they actually knew exactly what was happening? Dr. Paul Jansson: Yeah. I think there is a moment in these conversations where the family understands what is happening and what needs to happen. And it's, I think, best if the family gets there on their own and works really well in that goals of care setting. And I think the love that they were expressing for her and the admiration and the appreciation, that was really profound to me. Dr. Lidia Schapira: One of the reasons why I love your piece is that it takes us from what we are now teaching as a goals of care discussion or a family meeting. And it brings us back more to the art of medicine, the joy of medicine, and the intimacy of these moments. This family was totally ready to accept you in their little circle and start to share things that were really very deep for them. Tell us a little bit about what it was like to be in the room with her husband, who's a retired physician, her daughter, who's a nurse, and the other family members who seem to be sort of helping one another to eulogize, as you said, in the most loving way, their almost gone mother and wife.  Dr. Paul Jansson: I am not an oncologist, and I do not have the pleasure of these longitudinal relationships that many oncologists have developed over months and years and decades for some of these patient physician relationships. And so as an intensive care physician, it's a very quick and powerful bond that we are really forced to make with the families. And so I actually never talked with this woman. She was intubated on the night shift and was brought to the intensive care unit, intubated and sedated, and I never got to meet with her. I never got to sit in the office with her and discuss her hopes and her fears and her journey and all of those things that are really more the domain of the oncologist. But in our specialty, I have to really develop this relationship very quickly, where people will trust a life and death discussion with someone whom they've only known for 15 or 20 minutes in some circumstances.  And so it really is a privilege and an honor to be granted this degree of trust and disclosure and openness about who the patient is and was in the life before I met her. And so sitting in that room, it's always very awkward to start. It's a converted conference room with some boxes in the corners, and there's only, as I wrote in the piece, a box of tissues on the table. And so very quickly, we have to go from, “Paul Jansson, I'm the intensive care doctor,” to these discussions of life and death, and how to negotiate this very fraught transition, I think is really the point that I think you're getting at in the art of medicine. And how do we go from 0 to not 0 to 60, but 0 to 100 with these really life and death decisions? And that's very difficult. Dr. Lidia Schapira: In a flash. Dr. Paul Jansson: Exactly. And far sooner than anyone wanted, I think, if any of these families. Everything is so sudden. I even wrote about this in the piece. She had a DNR, DNI in place, and they got the call at 03:00 a.m., 04:00 a.m. however early it was in the morning. And so you can really tell at that moment they were not expecting any of this. They were not ready for any of this. But unfortunately, we were in that circumstance. Dr. Lidia Schapira: You know, Paul, when I hear you speak, I remember a friend of mine who is an actor and teaches doctors communication skills, and she basically says that doctors and actors have 90 seconds to develop rapport with their audience. And basically in your field or in the emergency room, this actually plays out every day. You're absolutely right, we in oncology often build these relationships, craft these relationships over time. And we probably know the names of all the people in the room and we would know what they do. But you're just kind of walking into the scene. Now that you've had a little time to reflect, do you know what it was that led them to reverse that DNR/DNI decision? Was it panic? Was it not knowing? I think as a reader, I'm struck with the fact that they had a plan, they reversed the plan, and then they quickly just came right back to what the original plan was. Maybe they hadn't expected this to happen so quickly.  Dr. Paul Jansson: I think it's more common than we think it is, or perhaps it should be. And I think every family has a different reason for why this is. And I think for some families it's just they needed more time. And so this was for them a call that was at 04:00 a.m. and they were at home and they weren't with her. And many families just want to be there for the end. I think for some families there's a bit of denial, “Okay, sure theoretically she said do not resuscitate, do not intubate, but we're not at that point yet.” So I think for some families there's that. And for some families, it just takes more time than they're expecting. And that's not unusual in our world, as I think everyone there saw what was happening to her and what we had essentially done to her, intubating her and putting her on all the pressors and doing all these things that were somewhat against her wishes at the end of life, so we had done these things to her. And it just took a little bit more time to realize this was not what she would want and also to give them time to be there. But I think every family has a different motivation, and it's hard to say how you would react with that phone call at 02:00 a.m. It's never what you think it would be. Dr. Lidia Schapira: Yeah, it's the old president's commercial, right? “Who do you want to take this call at 03:00 a.m. when there's an emergency?” But when it's this personal, I can understand it. I wonder if you can tell us a little bit how it struck you when the family sort of very organically again reached the conclusion and her husband articulated, “I know what I need to do.” What did that feel like for you as the critical care doctor who is quickly trying to lead this family to perhaps what you would consider the most dignified or humane, compassionate denouement for them? Dr. Paul Jansson: I think the first feeling for me was relief and just knowing that the decision that they had made for her was the right decision. And it wasn't a decision that I needed to make and talk them into or negotiate with them. It was the decision that they knew was right. And I think the other thing that stuck with me so much was the love and humor that they displayed in this. And I think many, many families would cry and be sad, but how many families would sit there and make a joke about this strange food combination that she has from college and how she loves to cook from the neighborhood, and all of these just flashes of humanity and humor that I was not expecting from the family. And then in that moment, we went very suddenly from humor to this profound grief and appreciation and reflection on who she was as a woman and her personality and how well that complemented her husband. And it was just this emotional whirlwind where we go from bad news to laughing together to crying together, all in the span of what was probably 10 to 15 minutes. That really stuck with me.  Dr. Lidia Schapira: Paul, humor me here. I don't often get to interview a critical care doctor, especially on a public medium like a podcast. So speak a little bit to me and through me to our listeners. What can oncologists do to have a good rapport with the critical care docs and nurses who are actually looking after their patients? Sometimes there are all of these moments of anticipated tension, and I wonder if you can just give us a little instruction. Dr. Paul Jansson: That's a wonderful question. I think honesty and truthfulness is always incredibly important, and taking that relationship that you've built with the family over time and bringing us into that circle of trust and letting us give our perspective. And I am not the oncologist, as I said before, I do not know all of the data and all of these things that is well within your specialty, but I know that the specialty of critical care and what is and isn't achievable, and to have the oncologist team have those developed relationships and ideally some knowledge of what the patient would want and blend that with what I'm able to deliver as an intensivist. I think that the trust together and the working together for what the patient wishes and what we can actually deliver for the patient, that's really what is most meaningful in collaborating with the oncologists.  Dr. Lidia Schapira: Yeah, I say a little prayer for that. I know that I've walked into an ICU and hoped very much that my colleagues in critical care didn't see me as an oncologist in denial, somebody who wanted to be very much a sort of present for their patient. You probably have some of those stories. Dr. Paul Jansson: There's an interesting tension. Yeah, I think you exactly pointed that out, that there's this tendency to think that the oncologist is always going to offer yet another round of chemotherapy or some clinical trial that can be offered. And on the intensive care side of the fence, we're sitting and counting on our fingers and sometimes toes, how many organ systems are not working, and how we negotiate that hopefulness and optimism with who is in front of us and what we've been dealing with over the last hours and days and weeks. And I think the tension is probably more theoretical. Every time I talk to the oncologist, they're quite realistic. I think more than perhaps is in my mind. So I think there's more of a theoretical disconnect than there is in real life.  Dr. Lidia Schapira: Well, I hope our professions can coexist and work collaboratively for the sake of our patients. Talk to me a little bit about how you might use this very intimate story in your teaching, since you're part of a teaching faculty. Dr. Paul Jansson: Well, shortly after the preprint was posted, I actually received a letter by email from a faculty member at a teaching hospital affiliated with a cancer hospital, saying that he was going to start using this piece in his discussions about how to have goals of care discussions with his oncology fellows. And I think there are two different purposes of the question that I asked: “Tell me about her.” And I think they serve two distinct purposes. And the first is this humanizing and making a human connection that we talked about. It allows you to make some of that connection that you haven't had the ability to do over the last weeks and months and years. You can really see that patient as an individual person. And I think the second role that this question helps with, particularly for the intensivist, is it really helps to expectation set. And so for many people, the answer to this question will be, “Oh, well, she was running a mile a day, and she loved her pottery and she loved whatever it was that is her passion.” And for some people, the answer may be, “Well, she was having a really hard time lately, and she was spending more time in the hospital than out of the hospital.” And so that can also really help from the intensivist side of things with prognosticating and really being realistic about what we can offer at this moment. That's why I really like this question “Tell me about her,” because it really helps with everything all at once. It lets us make that human connection. It lets us gather some of the clinical information that we need, and it reminds us of why we're doing this job in the first place, and that's to take care of the patient.  Dr. Lidia Schapira: Yeah. My very last question now is this: It occurs to me that you have a lot of these moments, and as you say, you cry, you share in the human aspect of all this. And you're right there, you have a front row seat to this grief and this loss. Do you and your colleagues have any protocol or ritual to help one another and support one another and at least acknowledge the emotional load of your work?  Dr. Paul Jansson: That's an excellent question. I think from the intensivist side of things, when we have the conversation this way, it's actually a blessing to us. I think there's a lot of moral injury, particularly in critical care, and doing things to the patient that I alluded to before, that the patient wouldn't necessarily want, or unnecessarily prolonging life at the risk of suffering. And I think when patients and families realize that this is not what their loved one would want, I think for many of us, this is a relief, and it's a blessing and an honor to take care of patients at the end of life. When it goes like this, we're actually very happy. It's really a pleasure more than a cross to bear. Dr. Lidia Schapira: Yeah. Thank you so much for sharing your thoughts, your humor, your humanism, your incredible common sense, and I'm so glad that the piece just poured out and that you chose to put it in front of an oncology readership. So from our listeners, thank you so much.   And for those of you who are listening, thank you for listening to JCO's Cancer Stories, the Art of Oncology. Until next time, when we'll find you again. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.   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. Like, share and subscribe so you never miss an episode and leave a rating or review.   Guest Bio: Dr. Paul Jansson is an Emergency and Critical Care Physician at the Brigham and Women's Hospital and a member of the Harvard Medical School faculty in Boston.

In this heartfelt episode of Conversations with Rich Bennett, Rich sits down with Ashley LaCosse and Becky Turner, hosts of the podcast "Two Girls with Cancer." They share their deeply personal cancer journeys, from diagnosis to treatment and survival. Ashley discusses her battle with rare neuroendocrine cancer, while Becky recounts her fight against stage three HER2-positive breast cancer. Despite their struggles, both women highlight the importance of positivity, resilience, and the support they've found in each other. This episode is a testament to their strength and determination.Two Girls With CancerSponsor Message:This episode of Conversations with Rich Bennett is proudly sponsored by Elite Power Washing, Maryland's top-rated exterior cleaning company. Elite Power Washing provides professional pressure washing, house washing, roof cleaning, and more. With a commitment to exceptional customer service and satisfaction guaranteed, they ensure your home or business looks its best. Serving Baltimore, Harford, and Cecil Counties, Elite Power Washing uses industry-standard methods and equipment for outstanding results. Visit elitepowerwashingmd.com for more information and to schedule your service today.Send us a Text Message.EMILY ANNE PHOTOGRAPHY – "everyday is a day worth capturing all of life's precious moments, one photo at a time." (emilyadolph.com)Elite Power WashingMaryland's #1 Rated Exterior Cleaning and has earned the Harford County Living Stamp of ApprovalDisclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.Support the Show.Follow the Conversations with Rich Bennett podcast on Social Media:Facebook – Conversations with Rich Bennett & Harford County LivingFacebook Group (Join the conversation) – Conversations with Rich Bennett podcast group | FacebookTwitter – Conversations with Rich Bennett & Harford County LivingInstagram – Harford County LivingTikTok – CWRB (@conversationsrichbennett) | TikTok Sponsors, Affiliates, and ways we pay the bills:Recorded at the Freedom Federal Credit Union StudiosHosted on BuzzsproutRocketbookSquadCast Contests & Giveaways Subscribe by Email ...

We deep-dive into the films and television that best represent the different experiences of having breast cancer with our guest filmmaker and indie journalist, Traven Rice. We look at how things can change for people experiencing recurrence, why you need a support network, and Traven's wish for a trigger warning for films and TV with cancer stories. CW: Conversations about terminal cancer and death. Support Traven's latest short film about breast cancer at LayLeftyDown.com DOWNLOAD TRANSCRIPT HERE: https://braaainspodcast.com/s/Braaains-Podcast-Transcript-EP59_-The-Family-Stone-and-Other-Breast-Cancer-Stories.pdf Contact us: BraaainsPodcast.com Follow: @BraaainsPodcast Music: @_Deppisch_ Support this show: Patreon.com/BraaainsPodcast

Listen to ASCO's Journal of Clinical Oncology essay, “The Road Less Traveled: Perspective From an Australian Oncologist” by Stephanie Hui-Su Lim, Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. The essay is followed by an interview with Lim and host Dr. Lidia Schapira. Lim shares her thoughts as an oncologist dealing with a patient that has decided not to continue with treatment.  TRANSCRIPT Narrator: “The Road Less Traveled: Perspective From an Australian Oncologist” by Stephanie Hui-Su Lim  He had been diagnosed with metastatic colorectal cancer in his late 30s and was responding well to first-line treatment. Physically fit, with a good tolerance to therapy, there was no stigma of sickness or telltale signs of cancer lurking around him. His partner usually attends with him, offers polite nods, few questions asked, but you could sense her underlying nervousness and fear of the unknown. Between the short phrases of broken English and the interpreter talking, consultations were usually pleasant, the right questions were asked, and I would end the consultation by asking how his family was doing back in Vietnam. Born to Chinese-Vietnamese parents in a city on the outskirts of the capital, he migrated to Australia 10 years ago. He worked hard, exercised, ate a healthy blend of an Asian and Western diet, and check-boxed all the requisites to build a good life. On this occasion, his cancer was slowly progressing although remained largely asymptomatic. His optimism stayed stable, and he kept his full-time job. I discussed switching treatment. “Do you have any questions?” As I shuffled the consent form, information sheets in Vietnamese, pathology form, imaging request, and follow-up bookings, I waited for the interpreter on the other end of the phone to speak. COVID-19 was still lingering, and our face-to-face interpreter service had largely been replaced by phone calls. My now 40-year-old patient, alone today in the clinic room, looked at me and the care coordinator, then spoke something to the phone. The voice on the other end said he has no questions, he is “keen to get on with it.” “Ok then, we'll get him to sign here, and I'll need your healthcare interpreter number too.” An exchange of words ensued, perhaps some things were repeated over. Then my patient smiled, and waited. “He says thank you doctor but he doesn't want any treatment.” It was not the answer I was expecting. I had explained his slow disease progression, multiple lines available, and good tolerability of treatment, maintaining his quality of life and maximizing survival. I had gone through the projected life expectancy at this point, which was still measured in the order of short years if we pursued all standard therapies. “Can you ask him again? That he does not want any treatment?” Perhaps the interpreter had not relayed what I said. Perhaps I had not emphasized the benefits of continuing treatment. Perhaps there were misplaced reasons for declining evidence-based treatment, the clues of which I had learned to pick up quickly, gleaned from conversations over family dinners from my own family of migrants. When my patients decline treatment in a context where the clinical benefits clearly outweigh potential harm, I often feel I have not done enough. If I spent more time talking them through their decision making, guiding them through hypothetical what-if scenarios, then would we have gotten to the same page? Was I sure they were compos mentis? Should I call the other listed relatives and have the same conversation with them? In his case, he had made a capable and informed decision. We are used to the well-trodden path of exhausting appropriate standard treatment before transitioning to a best supportive care approach. However, when patients choose the less traveled path where their cancer journey and life expectancy are truncated by choice, we may struggle to understand their decision. I felt a sense of frustration at his polite declining of potential years of life and unfairness when the next patient, unfit and exhausted of all therapies, begged for more treatment options or anything that could give them another extra day. I sought to try to better understand the reasoning behind his decision. I have encountered many culturally and linguistically diverse (CALD) patients throughout my journey as an oncologist and personal experiences in my own migrant family. Our health district has one of the most diverse populations in the state, with one in 10 having limited English proficiency. Almost half the population speak a language other than English.1 We often see as many interpreters as patients in the waiting room, multiple extended family members crowding into small consult rooms, and multitude of language translations of patient booklets being the only recognizable information to new patients in an otherwise foreign cancer center. I understood the importance of cultural awareness, and that cultural differences feed into decision making. But what were the beliefs, concepts, and cultural norms that shape what they do and value? An Australian study investigating the attitudes of Chinese migrant patients toward cancer identified several key areas including the nondisclosure of a poor prognosis, importance of family in mediating between health professionals and patients, incorporation of Chinese culture–specific treatment, importance of interpreters, and psychological and spiritual support.2 Chinese patients use combat strategies on the basis of traditional Chinese medicine, Chinese beliefs of food to maintain health, exercise with Qigong, Feng Shui/spatial organization, and ancestor worship.3 Chinese illness conceptualization includes concepts of karma, fate, and retribution.4 There are recurring themes that arise, with another study highlighting the importance of the Chinese beliefs in fate and luck, ying and yang, stoicism as a coping mechanism, importance of family, fear of losing face, and denial of diagnosis as a means of protecting the family. A common thread of family playing an essential role, rather than a patient autonomy approach, was evident. There is a need to incorporate these beliefs into culturally appropriate programs.5 Sadly, not much is known about the cultural impacts on patient decision making. Research into race, culture, and ethnicity is thought to be too restrictive.6 Research investigating interventions to improve patient-centered care and participation in the treatment process in CALD has found positive effects of culturally tailored video and patient navigator interventions.7 A recent review also found patient navigation as an effective strategy in improving patient care, from screening through to diagnosis, treatment initiation, and likely also in the active treatment and survivorship phase.8 Importantly, cultural barriers were evident. An Australian study looking at CALD needs in outpatient cancer clinics highlighted the importance of recognizing language-related needs and care teams adapting practices and available resources to make it work for CALD communities.9 Work in other CALD groups has also focused on the triadic relationship between the patient, the patient's family, and physicians.10 Latin American women who were less acculturated deferred to their families or friends to make treatment decisions, highlighting the importance of familism as one of the most culturally specific values for Latinas. Loyalty and solidarity among members of the family are integral to decision making. Asian and Latino patients are seen to have a higher rate of patient passivity because of cultural norms that respect physician authority.11 A systemic review of cancer beliefs in minority populations, the majority based in United Kingdom and United States, found low health literacy, fatalism, and stoicism as common themes.12 Decision making in a systematic review, with a predominant African American minority group, found the themes of spirituality, fatalism, and acculturation to be important in the treatment decision process.13  Ultimately, all these cultural beliefs and concepts feed into how patients decide which treatment road they wish to take. Shared decision making models in ethnic minorities have taken into account human values recognized across different countries and the relation between these.14,15 As clinicians, we often focus on the disease, with the goal being to get rid of as many cancer cells as we humanly can and prolong our patient's life expectancy while maintaining quality of life. I often feel we require tangible goals which can be measured in time and percentages, hazard ratios, and survival odds at 2 or 3 years. For the patient sitting on the opposite side of the desk, who are only single points on a Kaplan-Meier curve, goals may be very different, shaped by their own cultural values and beliefs. What numerical value can we place on traveling overseas back home, enjoying conversations over family dinners, rather than going to the cancer center for the next cycle of treatment? My patient had decided his goal was to return home to his family in Vietnam. I saw him in clinic several times, each time gaining more of an understanding of his decision. I spoke to his partner, we obtained a face-to-face interpreter. We discussed culturally appropriate support groups. He was active in local community groups who provided spiritual and existential support. I enquired about herbal remedies, which he had been on preceding his cancer diagnosis and continued with our pharmacist's approval. We turned to discussing where he was going to be living in Vietnam, potential complications during the flight home, provision of a medical letter, and copies of his tests. He remained uncertain about the prospect of further treatment, that it was hard to access good medical care and did not offer any answers about whether he planned to seek out treatment in the big city hospitals back home. He reassured me he would be fine. Every time I see a CALD patient, I remember my patient who politely said no, thank you. I wondered if he ever accessed any treatment, how quickly his disease progressed, when and how he died. My initial frustration has evolved into the understanding of how important it was for him to be surrounded by family. I found solace knowing he died with family by his side. The treatment he wanted could not be offered through an intravenous drip or medication. It could only be found in the safe familiarity of family. Every time I see a CALD patient, I try to create a culturally familiar place for them to be treated and place their decision making amid their cultural beliefs, norms, and values. The theme of last year's World Cancer Day is “Close The Care Gap.” Language, literacy, ethnicity, race, income, education, socioeconomic status, and geographical location are just a few of the factors that contribute to the cancer care gap. We need to have cultural sensitivity in mainstream health care and respect the differences that feed into the decision to accept or decline treatment in ethnic minority groups. Ethnic minorities are defined as nondominant groups, connected by a shared cultural heritage, values, and often language. It is important to note that this is also a relative definition, and my patient in Australia falls into the CALD group, but would be the dominant group back in his home country of Vietnam. Health and illness are not only visceral but also a social and cultural phenomenon. Sometimes, it is recognizing that closing the care gap does not bring us to the same destination, but to walk the road less traveled with them. As the years pass and I reflect on my patient's cancer journey, I have come to understand that as his doctor, it was my job to ensure he understood his disease and treatment options. However, perhaps even more importantly as his doctor, it was my honor to support him down the path he had chosen. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. With me today is Dr. Stephanie Lim, a Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. In this episode, we will be discussing her Art of Global Oncology article, “The Road Less Traveled: Perspective from an Australian Oncologist”.   At the time of this recording, our guest has no disclosures.  Steph, welcome to our podcast, and thank you for joining us. Dr. Stephanie Lim: Thank you very much for having me. Dr. Lidia Schapira: Let's start by talking a little bit about the role of writing and reflection for us in oncology practice. Tell us a little bit about what led you to write this case up and then to decide to share it with your colleagues.  Dr. Stephanie Lim: Yeah, so writing is definitely a creative outlet for me. I also love to paint, and I think there's so much art in the oncology space. There's so much storytelling, the rich and diverse stories that our patients live out in their cancer journey. So I think for me, writing definitely is an avenue for me to process the patient scenarios, to distill what I've experienced emotionally with the patient in front of me, and really to put it down on paper. It's almost a debriefing exercise as well for me sometimes. It's quite cathartic to write and to paint, and I find it's also a way to remember a patient. So if there's something I really don't want to forget, I think writing is a way to almost memorialize that patient's scenario and that patient experience. Dr. Lidia Schapira: Very beautifully said. So with that, let's go to the case in the particular patient that you chose to write about. And in my reading of your essay, I think you have a message. What is that message for the reader?  Dr. Stephanie Lim: So I think let's take a step back and just go through some of the themes that really resonated with me, that took me quite a few years to go through and think through before I actually wrote it down in this essay. In fact, this essay is an amalgamation of quite a few cultural and linguistically diverse, or CALD patients that I've met and looked after over the years, and those themes just kept recurring.  The first is patients when they said no to treatment. As a clinician, I struggle. I struggle with that when patients flatly refuse what I sincerely feel is the best treatment option for them. I feel frustration, disappointment, even anger and sadness, almost grieving that lost opportunity for potential life lengthening years that the patients may otherwise have. In fact, I was listening to one of your other podcasts the other day, “Knuckleheads”, which, again, resonated with me because it was, again about another story of patient refusal and a different story, but the same theme. And I think when you add the CALD population into it, which is really the theme, the message of this essay, you add another layer of complexity, another layer of cultural diversity and differences to an already complex decision making process. So those two things really sort of challenged me over the years.  And I think the other pervasive theme is that human side. We always talk about the art of oncology, the humanistic aspect, but it's true. So I think the importance of the patient's story and really just paying attention to the background and that lived experience. Someone once told me, medicine, it's a humanistic enterprise, it's not just about numbers and medians. In fact, in the essay I mentioned that the patient in front of me is really just one point on a Kaplan–Meier curve. Medians to them don't really mean very much. There's really no value that we can place on time spent with family. Or in this case, when I tell a patient they've got progression, or try and outline and map out the next treatment plan, and then they turn around and ask me, “Okay, doc. So can I hop on a plane, fly across to the other side of the world and spend three months with my family? Because that's what I want to do.” So I think there's that struggle of trying to really do what's best for the patient in terms of medians and survival and quality of life, but also trying to balance those things that are really hard to put a value on.  I hope the message of this essay is that we can try and understand, identify these things, pay attention to patients, listen to their stories, and really help appreciate those choices. So it's certainly by listening to them and really trying to understand more about CALD and the concepts and values behind their decision making. I've grown to appreciate the choices they make and really helped to support them down what I called the path less traveled, a very unfamiliar path that I otherwise wouldn't have chosen for them.  Dr. Lidia Schapira: So let's unpack all of these wisdoms that you've just told us about. The motivation is clear, the intentions are clear. Let's talk a little bit about your discomfort as an oncologist, because I'm sure our readers and our listeners have experienced that when a patient gives you an informed decision to refuse treatment, why do you think it makes us so uncomfortable? And why did it make you so uncomfortable to have your patient say, “Thank you very much, I understand you, but no thanks”? Dr. Stephanie Lim: Yeah, I think as clinicians we want the best for our patients. And I think a lot of the time that is what's best in terms of survival, what the evidence says we should be doing, weighing up the pros and cons of treatment. And we map out the lines of treatment for our patients while trying to maintain a quality of life and take into account all their wishes, of course. But I think sometimes we might get carried away with what we want for them or what we feel is best for them. But listening, if you really spend time asking what they really want, it might be something as simple as I just want to spend more time with my family rather than coming to the chemo suite for another infusion. I think as time goes on I'm doing a lot more listening, a lot less talking.  When I started out I was telling patients medians and this is what we're going to expect, this is the 50% survival rates, and a lot of time patients look at me and it means not very much to them. So I think for us there is a root that in our minds we've mapped out for them which we sincerely feel is the best for them. And I think when they refuse that it can be quite frustrating, but also I think, challenging because as I said, it's a path that's unfamiliar. When patients go from diagnosis to, “Well, I actually don't want any treatment,” really they shorten their- as I think I put in the essay, intentionally shortening their survival and choosing best supportive care when they're not there yet is something that I still struggle with, especially in my younger patients. Dr. Lidia Schapira: So let's talk a little bit about that. And I'm just challenging you in the best possible collegial way here when we talk about honoring our patients autonomy and providing sufficient information for them to really give us informed consent based on being aware of their choices and trade offs. And yet when those decisions don't conform to what we think we would choose or what we've recommended, there's disquiet. And yes, we know that the patient ultimately is the main decider on what gives their life value and meaning, but it's difficult for us. Can you talk a little bit about how you resolve this tension in your practice? Even if a patient is very fluent in your primary language, that's almost a detail. It complicates things here. But it's not the only thing that really, I think, is so challenging and feels so difficult sometimes for the oncologist.  Dr. Stephanie Lim: Yes, I think in the CALD population, there's several other layers of complexity. So yes, the patient is ultimately the person receiving treatment and yes, they are the ones who should be deciding what they want. I think in the CALD population it's more complex because we talk about patient and clinician shared decision making, but there is this triad of family physician and patient relationship that exists in a lot of CALD populations, not only in Southeast Asian or South Asian, but perhaps even in the Latin American population, and that importance of families. So there is not just a patient and a physician, but there is also the whole family that is making that decision.  To complicate things in Asian culture, there is also this autonomy that's given to the doctor. So that belief that the decision making in some ways should be delegated to the health professional because they're the ones who know what they're doing. And a lot of my Asian patients might say, “Well, you're the doctor. You should be telling me what to do.” So I think it's a balance between respecting that, if that is their belief, respecting that doctor autonomy, but also taking into account that triad of decision making with patients, family, and even the wider community. So I think certainly in a CALD population, my approach would be to really understand why they've made that decision, to involve the family in that decision making, perhaps to see the patient over time, over multiple consultations, which we've done with this particular patient in the essay, and really just to understand what the barriers are or what their reasons are for going down a different path to what I've recommended. And I think once that's all unpacked, I think it becomes quite clear and it gets us to the same page. Dr. Lidia Schapira: So, Steph, if this patient had been 65 or older, do you think it would have been easier for you to accept his decision to say ‘no' to treatment and go home to be with family, whether or not access to any treatment is available to him there? Dr. Stephanie Lim: That's a good point. I think I personally do struggle more in my younger patients, patients closer in age to me at a similar stage of life, they have young children, and I think a lot of it is because they are so fit. We feel that they can tolerate so many lines of treatment. I'm almost grieving that lost opportunity, lost time that they may have with their children or their family. So I think definitely in the younger patients, it resonates with me more. I struggle more with that. Having said that, it's still a struggle when older patients who are fit for treatment say ‘no'. But definitely, I agree with you. I think the younger patients definitely are harder to manage.  Dr. Lidia Schapira: I was very impressed in reading your essay with the fact that you remained curious about the person who was your patient. You were curious and engaged and wanted to learn what he was thinking. And you not only wanted to make sure that he understood his options medically, but you wanted to understand the context, as you say, who else was influencing the decision, and still wanted to preserve the relationship. Tell us a little bit about how that evolved over time and what you learned and how you brought yourself to a place where you could accept this, at least not be distressed by his refusal of treatment.  Dr. Stephanie Lim: So I think, again, a lot of it was listening to his stories. Over time, that conversation shifted from me trying to tell him that if you have this treatment, this is what we expect, this is what we could gain. These are the survival years that you potentially could benefit from. So I think the conversation, over time, shifted from that to a focus on his values, other support systems, whether it's the support communities that were in place, the importance of even complementary or Chinese medicines that he was also pursuing, basically trying to unpack all that. And I think our conversations shifted from a lot less talk about treating the cancer to treating him as a person and what he needed.  So I think over time, I basically sat back and listened to him and what he wished to do. And over time, that conversation then evolved into, “Okay, you're going to leave, so how can I best support you?” And even then, I was trying to see if he was going to seek treatment overseas. I was ready to call someone at the other end of the world to say, “Here are the medical records. This is what can be done for him.” But I think over time, I've come to realize that definitely was not his priority. He needed to be with family. He wanted to go home. And as a clinician, as his treating clinician, I think my job was to support him through that and try and understand. So I think over time, just spending that time listening to them, I did understand. I did struggle with it. But I think ultimately, I was at peace with his decision.  Dr. Lidia Schapira: In the essay, you mentioned that your family also migrated to Australia. Do you think that their experience in some way has shaped your attitude towards understanding cultural and linguistic differences? And if so, how?  Dr. Stephanie Lim: Yeah, thanks for asking that, Lidia. So I was born in Southeast Asia. In fact, I grew up in Brunei, on Borneo island, which is in the heart of Southeast Asia. My dad is Bruneian. My mom is Malaysian. I did finish off my high school in Australia and did all my medical training in Australia. So this is through an Australian lens. In fact, the reviewers wanted me to include that, to point out that CALD is a very relative definition. But I think I class myself as a 1.5 generation Australian. So I hope that I do have some insights from my background and my upbringing to understand a little bit more about the nuances, to be able to pick out some of the subtleties when I see patients, when I talk to patients, that complex cultural belief that underpins all their decision making. So I think that definitely, I hope, has enabled me to be more sensitive and to be able to pick out some of those nuances that helps me better understand and frame a patient's decision making. Dr. Lidia Schapira: And ultimately, did you feel all right with your decision and your patient's decision? Dr. Stephanie Lim: Yes, I did. So I think ultimately, the goal is to create this culturally safe and appropriate place for patients where they're comfortable, where the clinicians are also comfortable with that final decision that we reached. And I think we got there. But my hope is that with all future patients, that we can create this with the help of patient care navigators, patient translators. It comes from a systems level, a team level, and definitely an individual level to understand, identify these concepts, as I pointed out in the essay, to reach a point where we feel that the patients have had a culturally safe and language appropriate care, that we've explored all the avenues, all their concepts, all their beliefs, and we've reached the decision that we're both comfortable with. Dr. Lidia Schapira: Well, Steph, it's been a pleasure to chat with you today, and I know that I did, and I know my colleagues have learned a lot from reading your story and wish you all the best. And thank you for sending your work to JGO. Dr. Stephanie Lim: Thank you, Lidia, it was a pleasure chatting to you. Dr. Lidia Schapira: And until next time, thank you for listening to JCO's Cancer Stories, The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO shows asco.org/podcasts. 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.  

In this special episode of Black Women Rising, we have a candid talk with Dr Aziza Sesay (@talkswithdrsesay) and cancer survivor Dawn Butler MP (@dawnbutlerbrent). The trio, specifically focus on people being aware of the many signs and symptoms of cancer and being body aware, with the aim to increase knowledge and understanding of cancer symptoms. Remember - if something in your body doesn't feel right, please contact your GP practice. It's probably nothing serious, but finding cancer early makes it more treatable and can save lives. To find out more visit: nhs.uk/cancersymptoms

In this episode, Leanne was joined by Shalisha James Davis, a British actress currently in the popular soap "Casualty". Shalisha opens up to Leanne on how it has been for her being diagnosed with Ovarian cancer. The conversation touches on life before, during and post-diagnosis and how he has been navigating through everything since age 26.

March is Colorectal Cancer Awareness Month. Colorectal cancer is the #1 cancer killer of men under age 50 and #2 of women under age 50. In this episode of Further Together, Michael Holtz welcomes his best friend, Ryan Vieth, as guest co-host. Ryan is in active treatment for stage IV colorectal cancer; Michael is a 12-year survivor of stage III colorectal cancer. They met when they were named 2023 Ambassadors for Fight Colorectal Cancer, a leading advocacy organization dedicated to the fight against colorectal cancer. Together, Michael and Ryan have a conversation with Anjee Davis, CEO of Fight CRC, during which they talk about cancer advocacy, the importance of survivors sharing their stories to eliminate the stigma associated with CRC, and the need to advocate all year long. Fight CRC creates opportunities for survivors, patients and caregivers to find community through virtual meetups, the Ambassador program and more. They also discuss United in Blue and Call on Congress, two Fight CRC events in Washington, DC, later this month. To learn more about Fight Colorectal Cancer, and to participate virtually in United in Blue and Call on Congress, visit https://fightcolorectalcancer.org/

In this episode, Paul Campbell, the newly appointed CEO of Cancer Black Care, joined Leanne. Leanne speaks to him about his prostate cancer experience; he delves deeper into how it was going through cancer as a black man and male health stigma and also touches on Cancer Black Care and plans.

This episode features Cheryl Johnson, who has stage 4 neuroendocrine cancer, and Judith Nepital, who has stage 4 bile duct cancer. Leanne speaks with them both about their life before and now, touching on the impact and work they both do within the cancer industry and the change they want to see.

Listen to ASCO's Journal of Clinical Oncology essay, “The Heritability of Cancer” by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada. The essay is followed by an interview with Granek and host Dr. Lidia Schapira. Granek shares how her mother's diagnose with breast cancer continues to shape her own life and experiences. TRANSCRIPT Narrator: The Heritability of Cancer, by Leeat Granek  I was 9 years old when my mother was first diagnosed with breast cancer and 25 when she died. The boundary between before and after is so clear that it feels like I have lived two lives. I went from being a careless, cerebral, quirky child to a rough version of the responsible, reliable, and vigilant adult I would eventually became. With cancer came the fear of losing my mother, and with that fear came an unwelcome but necessary maturity. There were other important life events impacting our family around that time that contributed to this sense of split. We had just moved from Israel to Toronto and knew few people in our new environment. My mother had just given birth to my baby brother, and my parents had bought a new house for our growing family. At the time, I was starting third grade in a new school—the fifth new school since beginning kindergarten. All this in addition to the diagnosis. My mother was only 33 years old—the same age I am now. While I adapted to everything else—new house, new school, new brother, new country—cancer insisted on sticking around, and it claimed not only my mother's life but, in many ways, my own. Cancer enters the body of the caregivers in ways that move far beyond the domestic work involved in the running of the house or the management of medications and appointments. It can become part of caregiver DNA through inherited genes, but it often does so in more insidious ways. My mother lived with the disease for 17 years before she died in 2005. It is fair to say I grew up in the hospital. Over the years, there were multiple surgeries, along with episodes of weekly chemotherapy and daily radiation sessions. She suffered a host of complications that came with metastatic disease and its treatment, including four instances of strep A bacteremia. Many major events happened in the hospital. We ate Chinese food with our matzos on Passover in her room and lit Hanukkah candles in the waiting room where we accidentally set off the fire alarm on the seventh night, to the consternation of the nursing staff. My 11th, 15th, 18th, and 25th birthdays were celebrated in cramped hospital quarters, cutting the birthday cake with a dull plastic knife. Indeed, the last birthday we had together was my 25th, and we marked it in the hospital 2 days before she died. In her last lucid moment, she managed to miraculously lift out of the fog caused by brain metastases to give me a kiss and exclaim “Mazal tov, Leeatie!” I remember the sounds and the smells. Static codes being called out over the hospital loudspeakers. The haunting “clink, clink, clink” of the staples being removed from my mother's skin graft and landing with a loud clatter in a silver bowl. The pale green hallways and their antiseptic smell, which I grew to hate. The airless temperature that was neither hot nor cold—hospital weather, I used to call it. The hospital, with its sounds and smells, was my second home. It sounds awful. And it was a lot of the time, but there were many good moments as well. My mother was smart, intuitive, funny, and astonishingly optimistic. She was always laughing and incredibly giving with her love and affection. We were exceptionally close. Her eyes lit up and her arms stretched out to give me a hug every single time I walked into her room. She would say things like, “Leeatie, I love you so much. I wouldn't change a single thing about you! How did I get to be so lucky to have a daughter like you?” and “There's no one in the world I would rather spend time with than you.” I didn't have to do anything to earn her affection. I felt that I always came first, that I was always wanted and loved, and that my mother was always entirely there for me in every sense of the word. The hospital days that punctuated much of my childhood, adolescence, and young adulthood were both an annoyance and a blessing. There was nothing else to do but simply be together, which was fun and easy, thankfully. When I was older and no longer living at home, I would sometimes sleep over in her hospital room during her admissions. We would curl up in the twin bed and talk for hours until we both fell asleep, or we would sit together, each absorbed in her own book, comforted by the warmness of being together.  When I think about being a caregiver for my mom, and by extension a caregiver for our family, it was not the hours of care work—the babysitting, driving to appointments, spending time in the hospital—that consumed me. The impact was long-lasting and continues to this day. As a health psychologist and a researcher in the area of psychooncology, I know the permanent and long-term devastations cancer causes throughout the caregiver's—in my case, the daughter's—entire life span. To this day, I have no real sense of what normal physical development for a woman should feel and look like, and in some sense, I never will. I entered puberty around the same time my mother was having her breasts and ovaries removed, which made that phase frightening and emotionally difficult. And now, I have no mother to turn to and ask about my endlessly evolving female form, no mother to guide me through future pregnancies or talk me through gray hair and menopause.  Cancer shaped my young adulthood and my emotional development. At 20 years old, I was dealing with issues facing 60-year-olds who care for ill and aging parents. Because part of me recognized that time was running out—indeed, because I lived almost my entire life with a neon awareness of my mother's mortality—I was tethered to home and making decisions about school, life, and love that would keep me close to her. I don't regret these choices or a single moment that I chose to spend with her, and now I have an entire lifetime to come and go as I please. Being challenged with a cancer-driven perspective at 20, however, carries risks of having an entire lifetime being developmentally out of step with one's peers and unprepared for life events outside a hospital. For example, at 25, I could look death in the face without trembling and without abandoning my mother at her end, but I was unprepared to face the dating world that most young adults would have no trouble navigating. Although I was and remain a loved, nurtured, and supported daughter, cancer diverted the vast majority of the temporal, emotional, financial, and physical resources in our family toward fighting the disease. When she was alive, my mother was fully present in my life. But even her unconditional love could not repair the reality of my out-of-sync development as a child and young adult or today make up for her continued absence in my life. My absent mother is at the core of a black hole of grief that remains inside of me and that has been painfully pried open with subsequent losses to cancer—my grandmother and my aunt, a professor I admired and family friend that I loved. Each loss re-exposes a haunting grief I have learned to accept and live with. Grief is a shadow that looms large in my life. It is both the topic I chose to study and the affect I advocate fiercely for,1–4 because as I have learned through my own experiences and research, love and light come from the same place as grief and darkness.  The ability to grieve our losses fully also allows us to love and appreciate the people in our lives when they are still with us. And then, of course, there is the worry: the biannual check-ups, magnetic resonance imaging scans, and mammograms; the surveillance and the false positives and the constant paradoxical tension that comes with the awareness of the nature of these tests provide a false sense of control over a disease that refuses to be harnessed.  The literature about the impact of parental cancer on children at the time of diagnosis, during treatment, after surgery, and even at the time of death is extensive,5–6 but few of these studies acknowledge how much this disease alters the life course of the child well after the parent has recovered or has died. Being a caregiver for a patient with cancer consumed much of my childhood, adolescence, and young adulthood when my mother was alive and charted the course for my future as a health psychologist working in the field of psychooncology. Although many years have passed and although I have a doctorate in hand, several years of postdoctoral training in the field of psychooncology, an academic career studying these issues, and dozens of publications from my research on the psychological and emotional effects of cancer on patients, caregivers, and their families,7–16 from time to time, I still feel like a scared 9-year-old child trying to gain control over this disease and get out of the shadow that cancer has cast on my life. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management. In this episode, we will be talking about her Art of Oncology article, "The Heritability of Cancer." At the time of this recording, our guest has no disclosures. Leeat, welcome to our podcast and thank you for joining us. Dr. Leeat Granek: Thank you so much for having me. It's a pleasure.  Dr. Lidia Schapira: Your essay is a classic, and I'm so glad that we were able to include it in the recent anthology of Art of Oncology. So let's start by talking a little bit about what led you to not only write, but decide to share this essay eight years after your mother passed of breast cancer. Bring us to that moment. Tell us what you were thinking.  Dr. Leeat Granek: Yeah, so that's a great question. And I recently, in preparation for this interview, reread it, and I was a little taken aback, even by how exposed and how vulnerable it was. But I really like that essay, and I'm really glad that it was published. It was kind of a culmination of a lot of thoughts that I was having as a person who has researched grief for many years, and as a person who was working in the field of psycho oncology, doing research in the area, and as a grieving daughter. And I think eight years is nothing in the grieving trajectory, right? We often think about grief as something acute that happens to you, and then you get over it and you move on with your life, and that certainly has not been my experience of grieving. I think it changes as you change, and it's just a constant presence in your life. And I was thinking about that in the context of being a caregiver for somebody who has cancer. So I think my experience is a little different than others, just because my mom was very young. She was 33 when she was diagnosed, and I was only nine. And she lived with this metastatic disease for nearly 20 years. So we had a very long journey with cancer. And I can kind of see now, as I reread it, the parallel thinking processes I had about grief and about cancer. And being a researcher in the field, I still feel that there are a lot of gaps in terms of the caregiver experience. But this idea of heritability, we often think about cancer as something you inherit genetically through our genetic makeup. But I think that it really, especially when you're young, changes your whole life trajectory. And I could not find anything in the literature that spoke about it in that very longitudinal kind of way and the way the impact of cancer changes you throughout your entire life. And so it just came from a very personal place, but also that intersection of being aware of the different literatures and how they came together.  Dr. Lidia Schapira: Let's unpack this a little bit. One of the things that you just said was that you shared your vulnerabilities, and I want to ask you a little bit more about that. Here you are. You're about the same age that when your mother was living with this as a young woman. I think you said that she was diagnosed roughly at the time that you were writing this. And you decide to explore this wearing a little bit of your research hat in a very deeply personal way. But then the question I wanted to ask you is your decision to share this with the community of oncologists, the people you knew very well because they had looked after your mother for all those years. Tell me a little bit about that. How did you make the decision not only to write it, but to share it? Dr. Leeat Granek: That's a great question. This also pertains to the research that I do, because a lot of the research I was doing at the time, as a result of my experiences with cancer teams as a child, looked at the emotional impact of being an oncologist. I did a series of studies looking at the way oncologists grieve and how they feel when patients die, some of the emotional burdens of the work. And they were very vulnerable in sharing their experiences. And so I thought, well, they're telling me about their experiences, I can also tell them about mine. And I think that there's kind of a mythology around oncologists. I'm doing studies now on surgeons as well, and I think there's the same mythology around surgeons is that they don't feel or everything is compartmentalized and everything's separate.  But from my research, I knew that that wasn't the case. And I felt that, although oncologists and oncology teams and nurses as well, witness patient suffering and family suffering, that there was nothing in the literature that kind of brought it home in this very visceral way. I don't think it would have been a surprise for any oncologist reading it, because when you follow families or when you follow parents, you see the children coming in. And so there was something about this intersection of their vulnerability and my vulnerability, enriching the experience of what it means to be a patient, and what does it mean to be a healthcare provider, which is not something that's often discussed in medicine at all. Dr. Lidia Schapira: So to your point, I think that telling the story was a beautiful sort of vehicle for opening up the topic. You were doing it through your research. But telling a story can often start a conversation in a very different way. That's what we try to do also in selecting these essays for Art of Oncology, to bring a story that's deeply personal, that reflects one's lived experience, but opens up a topic that is otherwise perhaps not talked about as much as we think it should. So let me go back and ask, what was the impact of telling the story on your research?  Dr. Leeat Granek: I just want to add something about what you just said about stories. The very first paper that I published on oncologist experiences of grief, I wrote an op-ed for the New York Times about that research. And it was very story-based. It was very much telling a story, and I was telling my own story as well as a story about the research. And the response to that op-ed was so profound and so much more powerful than any paper I had ever published. I got thousands of emails from people around the world, oncologists and healthcare providers around the world, just saying how touched and how moved they were by that op-ed. And that is the power of the story that you're talking about right now, that we're vying for these peer-reviewed articles all the time. But actually, the impact of just telling a story is so much more meaningful and visceral for the reader than just outlining the research findings. Dr. Lidia Schapira: And it sounds like just receiving all of those emails after your op-ed was probably very validating. We can get rejected when we apply for grants, but people were telling you what you're onto is really significant.   Dr. Leeat Granek: Yeah. And I think that validating in the sense that what I felt was that as you, exactly the words you just used, that it was a conversation that was not being had to the detriment of all. And so it validated that feeling of, yeah, this is something that's really important for us to be talking about in oncology. And just in terms of the response to "The Heritability of Cancer," it was a long time ago. This is 2014, so 10 years ago. I don't remember entirely what are the specific things that people said, but I do remember getting a lot of emails about it, mostly from healthcare providers, so less from caregivers or patients who may not have subscriptions to JCO, but maybe through the podcast now will have more access. Just saying this really shed some light as to the experience of what does it mean for the extended family that I think is not often considered. Certainly, we don't think about kids very often when a parent is going through cancer. Dr. Lidia Schapira: If you were to write this today, what would you do differently? Dr. Leeat Granek: I think what's changed for me– I don't think I would do anything differently, but what I think has changed is that I've had a child since I written that. Having a seven-year-old and thinking about what it's like to be going through a cancer diagnosis or cancer treatment while you have children. That piece was very centered on me and my experiences, and now I have even another layer of empathy and compassion for my mom, who had a newborn at the time. And I can just not imagine anything more– it's going to make me cry just even now just by thinking about it - it's just scary to have such a life-threatening diagnosis when you're a parent. Just like grief, like I said earlier, being a victim of cancer or being part of your family, that impact is lifelong and it changes as your development changes. Now as a parent, my grief is different than it was before I became a parent. And now as a parent, my understanding of what my mother was going through is changed. That terror and fear is so overwhelming. Dr. Lidia Schapira: So, Leeat, I can't help myself, but I need to ask you some practical questions. You're a psycho-oncologist, an expert in grief, and you've talked to and interviewed hundreds of oncologists who have shared stories, you're now a parent, you've lived through it. What it makes me think is that when we think about grief counseling or support for grieving children or bereaved spouses or parents, you think about it as an acute intervention and what you're suggesting is this needs to be explored throughout the life cycle. What are your thoughts about that and what should we be thinking about? Dr. Leeat Granek: I've written a lot about this in my grief work. The evidence for psychological counseling for grief is not strong actually when we look at the literature. For acute grief experiences in the immediate aftermath, sometimes it's helpful having someone to talk to. But in actuality, the most helpful is having a community in which grief is an open, accepted, acknowledged, part of living life. And that does not change after the first month or the first six months or the year, five years or ten years.   Other people may have moved on very quickly, but you're left with the impact of that loss. And I think the impact of that loss is not only after, when the person has died, it's also that progressive loss of function. The kind of witnessing of your loved one deteriorating. It's not just meals that you need, you also need that emotional support. And that emotional support doesn't necessarily have to take the form of, “Tell me about your grieving right now.” Sometimes it's just being with. And I think that certainly in North America, we're not very good at integrating grief, loss, pain, suffering, and negative emotions into our day to day lives. So partly, 10 years, 20 years, or 25 years later, it's hard for people to remember that loss.  So I think the person is grieving that many years after may have to reach out and ask for the support. But I think it's done really well in certain religions. I am Jewish and in the Jewish background, you have so many layers of mourning that's lifelong. So you have the acute grieving experience where it's seven days or 30 days or one year. And then every year progressively after that four times a year, you say a blessing and remembrance and give charity in the name of the dead. And for religious people, I'm not religious, this idea of every single day for that first year having to go synagogue and having to have at least nine other people that could be there with you to say the prayer for the dead, whether you believe or not believe, whether you're religious or not, I think the brilliance in those kinds of rituals is that it simply brings you together with other people who see you everyday.  And decades later, still that four times a year that you're meeting with people and you're saying a prayer, or that yearly yahrzeit, that memorial allows people a very very defined space in which to support the mourner. And I think other religions have it too.    Dr. Lidia Schapira: Those are beautiful thoughts, and I think it speaks to connection and community as a way of supporting rather than pathologizing the grief and thinking what one needs is some sort of a professional intervention. I can't help but add that as a community of caring oncologists, we are constantly grieving. We are immersed in grief, and in part, there is no label for how we feel. There is a small literature that you probably know far better than I do on disenfranchised grief, which is the idea that we can't quite claim to grieve because we weren't a relative or best friend, but we deeply cared and we lost and we grieve. So I find that this conversation is so helpful because I think what we're doing is we're talking about what we ought to be talking about more: perhaps acknowledging more from a point of view, as you say, of a parent, researcher, caregiver, medical or healthcare professional who's involved. We are living in a society where perhaps we are afraid to think that grief is a part of our life, and we can be happy even if we grieve. Dr. Leeat Granek: Yeah.  Dr. Lidia Schapira: Happiness is not just the absence of sadness, I think, I don't know. You are the psycho-oncologist, tell me if I'm wrong. Dr. Leeat Granek: I so appreciate what you're saying and it makes me sad to hear that grief is still so stigmatized among oncologists. I think what my research has found and all my conversations with people over the decades now is, of course, oncologists feel a lot of things. Not just grief but pain and suffering, distress at seeing their patients and their families suffering and declining. Why wouldn't they? They are human beings. So I think this idea that people don't feel or don't have space to feel is part of what leads to burn out actually. I think there's a kind of fear that grief and the pain and suffering is the burn out but it's not. In fact, what's the burn out is the inability to talk about or to have a space to discuss it. And I also think that the thing that gives meaning to the work is that relationship with patients.  And by the way, I'm finding that with the surgeons as well. The surgeons are even more kind of disconnected in terms of emotions. We kind of assume that they feel nothing, that they are so disconnected. By the way, I just have to say, the surgeons say, “I can't believe the oncologists does that job.” They find it really hard to believe that oncologists can do that, that they can never do that job. And the oncologists say that about the surgeons, too. So I think it's very interesting how different medical groups look at each other.  But there's this kind of sense that's very unique about the grieving experience of how care providers is and they feel a lot of guilt and a lot of self doubt, and self criticism when patients die even though they know consciously that there's nothing that they could've done and that is just the disease that is taking over. That lack of control and that sense of having failed the patient is so strong. That is a very unique grieving experience for providers who feel responsible for the care of their patients. The fact that there is no training or no education or no space to talk about that is just appalling to me as a psychologist. Because I just think you learn how to do everything else. There's so much training on communicating bad news, on dealing with patient anger, on dealing with patient emotions and how to respond. But nothing on how to deal with your own emotions in response to this. For years, it's just about communications training.  One of the things we find in the literature is that even when you provide communication training to oncologists that have to discuss end of life, often those skills are not sufficient to be able to have that conversation. And what's missing is the notion that I found in my own research that they don't have this conversation because they feel so uncomfortable with it themselves. And so until they have some self reflective practice for healthcare providers, all the skills training in the world is not going to help because it's about your own emotional resistance.  Dr. Lidia Schapira: Well, this has been a phenomenal conversation, and I hope people will look at some of the beautiful research you've done in this field. Thank you so much for having shared your own experience, for the work you do, and for participating in today's podcast.  Dr. Leeat Granek: Thank you so much. I really enjoyed it. Dr. Lidia Schapira: So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.   The purpose of this podcast is to educate and 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, experiences, 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.  New York Times Op-Ed: When Doctors Give Two Decades of Art of Oncology Guest Bio:  Dr. Leeat Granek is an Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management.  

In this episode, Leanne is joined by Nellie and Deandra, who are both influencers who have been through breast cancer diagnoses. Leanne speaks with them about their journeys, what it is like being an influencer and navigating a diagnosis, motherhood, Deandra being pregnant when she was diagnosed and what kind of impact the experiences have had/are having on their lives.

"Navigating Grief And Building A Legacy: S4 Ep3

This episode features Self-taught artist, photographer, filmmaker and broadcaster Simon Frederick, who has lived experience of bladder cancer. Leanne has an open conversation with Simon, touching on his journey, what it is like to be a public figure and a black man navigating cancer and how it has inspired his work.

Our first episode looks at the past, present, and future of Black Women Rising, featuring The Leanne Pero Foundation Chair Sharon Marshall-Green and Projects Lead Charlotte Crowl, who both have lived experiences of cancer and have been with the charity from the beginning. Leanne Pero, host and founder of TLPF, speaks with Sharon and Charlotte about their journeys through cancer, plus they discuss the growth of the Black Women Rising project and what it means to them to be a part of the team. After podcast notes Host: Leanne Pero @leanneperoofficial Guests: Sharon Marshall-Green and Charlotte Crowl @charlottecrowl Filming/editing/ Production: Grey waves  Sponsored by @palmersuk

Elizabeth Benedict is a renowned author and survivor of lymphoma. She recently shared her experience of battling cancer and how she fought to get the right diagnosis. Writing about her journey has helped her to come to terms with her illness and she hopes her book will inspire others to do the same. Despite being a writer, she found it difficult to open up about her struggles with cancer but hopes that by sharing her story, she can help others overcome their fears and find hope in their journey. Join us for this episode of the Project Purple Podcast to hear her inspiring story. You can follow Elizabeth on Instagram at https://www.instagram.com/elizabethbenedictwriter/. Interested in reading “Rewriting Illness?” Look for it at your local bookstore at https://bookshop.org/ or follow one of these links: https://www.barnesandnoble.com/w/rewriting-illness-elizabeth-benedict/1142558715?ean=9781942134916 https://www.amazon.com/Rewriting-Illness-Elizabeth-Benedict/dp/1942134916 To learn more about Project Purple, visit https://www.projectpurple.org/ or follow us on social media at these links: https://www.facebook.com/Run4ProjectPurple https://www.instagram.com/projectpurple/ https://twitter.com/Run4Purple https://www.youtube.com/channel/UCgA8nVhUY6_MLj5z3rnDQZQ

This week's episode of The 1 Girl Revolution Podcast features Shaney Jo Darden, founder of Keep A Breast Foundation - a nonprofit organization dedicated to reducing breast cancer risk and its impact globally through art, education, prevention, and action.  In 1999, Shaney Jo Darden discovered a close friend had been diagnosed with breast cancer and she wanted to do something to help and she realized that she could make a difference in a way that honored her friend's passion: art. As a result, Keep A Breast was born as a unique art concept that was developed to showcase the physical and emotional challenges of breast cancer. The result was a series of customized breast casts. In 2000, the first breast casts were officially showcased in an exhibition called “Keep A Breast.” It featured casts of pro-female snowboarders, painted by artists like Shepard Fairey and Ed Templeton. This signaled a shift toward an arts-oriented breast cancer awareness organization with a new mantra: Art. Education. Prevention. Action. Since then, Keep A Breast has grown and evolved and now has many programs within the organization. Their programs include Check Yourself (Digestible breast health education through printed materials, blogs and our KAB app.); the Keep A Breast App (A free, breast self-check app helps guide you through your monthly check and can connect you with health professionals.); Fit 4 Prevention (A national movement to educate about breast cancer prevention through fitness and wellness.); Keep A Breast Give Back Grant (Directly supporting BIPOC women who are breast cancer survivors or who have been diagnosed with breast cancer.); Treasured Chest Program (Where artistry meets therapy. TCP is designed to create a safe space that allows our castees to confront both physical and emotional changes that a breast cancer diagnosis brings.); Non Toxic Revolution (Informing, educating and inspiring young people to avoid toxic chemicals in their environment and food supply—especially those linked to the initiation of breast cancer.); and their most recent program, which Shaney Jo talked about for the first time (EXCLUSIVE!!!) Keep A Breast Valley (Boutique Wellness Center is being designed as a desert community that will provide the space and tools for visitors to explore and nurture individual and collective wellness.) Shaney Jo's story is so inspiring and the work that Keep A Breast does to empower women and support our sisters through their cancer journey is incredible. You don't want to miss this episode. In this episode, you'll hear:  Shaney Jo's inspiring life story; How she got into art, fashion, and design; The story of how Keep A Breast came to be and her personal connection to breast cancer (through a friend's cancer journey); How Keep A Breast has grown and evolved and stories of women they have helped through the years; AN EXCLUSIVE: Shaney shares about a new facet of their work - a wellness center for those going through cancer and cancer survivors;  And so much more. The 1 Girl Revolution Podcast is available on Apple Podcasts, Spotify, iHeartRadio, YouTube, and everywhere you listen to podcasts.  For more information on Shaney Jo and Keep A Breast Foundation, please visit: www.1GirlRevolution.com/keepabreast For more information about 1 Girl Revolution, please visit: www.1GirlRevolution.com

AfterThoughts was created to make visible some of the invisible cancer stories from within the young cancer community.We're back to bring you some extra special episodes to say ta'ra to Series Six - our Thoughtcasts. Bitesized episodes exploring three themes that some of our storytellers touched on. We're kicking off by looking at difficult conversations, something Yami, Maddie and Poppy all talked about in their episodes. Yami chats about talking with her boyfriend about being ill, Maddie talks about writing a will, and Poppy discusses conversations about having kids.For more advice on these topics, check out these resources:Relationships After Cancer TreatmentPlanning for the end of your lifeWrite your will onlineFertility & Cancer _______________________________________________________________AfterThoughts is hosted by Aiden Grant and Shaumya KularajanFind AfterThoughts on Facebook, Twitter and InstagramAfterThoughts : The Teenage Years is supported by Teenage Cancer Trust. Teenage Cancer Trust support those diagnosed with cancer when they're 13-24 and provide specialised nursing care and support to get them through treatment.As ever, AfterThoughts deals with some conversations you may find tricky to listen to. If you need any further support, please don't hesitate to reach out to a friend, or find support from any of the brilliant charities online.AfterThoughts is produced by Toby Peach and Alice-May Purkiss from Beyond Arts. Sounds by Kieron Lucas and Dinah Mullen.

AfterThoughts was created to make visible some of the invisible cancer stories from within the young cancer community.We're back to bring you some extra special episodes to say ta'ra to Series Six - our Thoughtcasts. Bitesized episodes exploring three themes that some of our storytellers touched on. We're looking at one of the most visible impacts of cancer treatment - hair loss.For more advice on hairloss, check out these resources:My afro was my pride and joyI didn't let weight gain or hair loss after chemo define meBody image & cancer_______________________________________________________________AfterThoughts is hosted by Aiden Grant and Shaumya KularajanFind AfterThoughts on Facebook, Twitter and InstagramAfterThoughts : The Teenage Years is supported by Teenage Cancer Trust. Teenage Cancer Trust support those diagnosed with cancer when they're 13-24 and provide specialised nursing care and support to get them through treatment.As ever, AfterThoughts deals with some conversations you may find tricky to listen to. If you need any further support, please don't hesitate to reach out to a friend, or find support from any of the brilliant charities online.AfterThoughts is produced by Toby Peach and Alice-May Purkiss from Beyond Arts. Sounds by Kieron Lucas and Dinah Mullen.

AfterThoughts was created to make visible some of the invisible cancer stories from within the young cancer community.We're back to bring you some extra special episodes to say ta'ra to Series Six - our Thoughtcasts. Bitesized episodes exploring three themes that some of our storytellers touched on. We often hear how going through cancer leaves us focusing on our physical health - but we forget about the other, just as important part of our health, the mental and emotional side of things. This Thoughtcast shines a light on that.For more advice on this, check out these resources:How cancer can affect mental health in young peopleHow to ask for help if cancer is affecting your mental health5 ways to look after your mental health during cancerCancer and mental health informationNot OK - A Mental Health Campaign_______________________________________________________________AfterThoughts is hosted by Aiden Grant and Shaumya KularajanFind AfterThoughts on Facebook, Twitter and InstagramAfterThoughts : The Teenage Years is supported by Teenage Cancer Trust. Teenage Cancer Trust support those diagnosed with cancer when they're 13-24 and provide specialised nursing care and support to get them through treatment.As ever, AfterThoughts deals with some conversations you may find tricky to listen to. If you need any further support, please don't hesitate to reach out to a friend, or find support from any of the brilliant charities online.AfterThoughts is produced by Toby Peach and Alice-May Purkiss from Beyond Arts. Sounds by Kieron Lucas and Dinah Mullen. 

AfterThoughts was created to make visible some of the invisible cancer stories from within the young cancer community.THE WHOLE GANG IS BACK TOGETHER. Join Aiden, Shaumya AND Toby and Alice as we take  a look back over some of our favourite stories from this series. We take it theme by theme and try to agree on the best bits. It ain't always easy, but we get there in the end. And what a series it's been. We've talked about long term impacts, feeling psychic, chicken nuggets, getting back to work, the mental health impacts, cancer with a newborn, navigating fatigue, writing a will, the power of words, facing your fears and having the best job in the world and tonnes more. And we've done it all with our new hosts Aiden and Shaumya.If you haven't listened to each of the full episodes yet, you definitely should. You'll laugh, you'll cry, you'll feel...dare we say it...inspired...and you'll feel less alone. Thanks to our amazing storytellers for showing up for AfterThoughts. We couldn't do it without them._______________________________________________________________AfterThoughts is hosted by Aiden Grant and Shaumya KularajanFind AfterThoughts on Facebook, Twitter and InstagramAfterThoughts : The Teenage Years is supported by Teenage Cancer Trust. Teenage Cancer Trust support those diagnosed with cancer when they're 13-24 and provide specialised nursing care and support to get them through treatment.As ever, AfterThoughts deals with some conversations you may find tricky to listen to. If you need any further support, please don't hesitate to reach out to a friend, or find support from any of the brilliant charities online.AfterThoughts is produced by Toby Peach and Alice-May Purkiss from Beyond Arts. Sounds by Kieron Lucas and Dinah Mullen.

AfterThoughts: The Teenage Years was created to make visible some of the invisible cancer stories from within the young cancer community.For episode four, we're joined by Poppy for her incredible stories of being diagnosed with Ewing's Sarcoma when she was 23. Not only is being diagnosed with cancer at 23 rare, Poppy was pregnant at the time. Her daughter, Bella (who she calls her boss) was born two days after her diagnosis, six weeks early. She spent over 130 nights away from her daughter in her first year of being alive due to cancer treatment.Poppy tells us about her post-birth baby shower before treatment began, trying not to be the girl who has cancer, finding Mummy's Star (a charity specifically for those who experience cancer around pregnancy) and being a team with her mum, her partner Tom and Bella._______________________________________________________________AfterThoughts is hosted by Aiden Grant and Shaumya KularajanFind AfterThoughts on Facebook, Twitter and InstagramAfterThoughts : The Teenage Years is supported by Teenage Cancer Trust. Teenage Cancer Trust support those diagnosed with cancer when they're 13-24 and provide specialised nursing care and support to get them through treatment.As ever, AfterThoughts deals with some conversations you may find tricky to listen to. If you need any further support, please don't hesitate to reach out to a friend, or find support from any of the brilliant charities online.AfterThoughts is produced by Toby Peach and Alice-May Purkiss from Beyond Arts. Sounds by Kieron Lucas and Dinah Mullen.

Today's episode is dedicated to those battling cancer in the triathlon world. In your own endurance sports community, you may have training partners and race-day competitors who have fought, or who are fighting, cancer. To discuss the brave fight of these athlete warriors, we welcome to the show Jayson Williams, Founder of the F*ck Cancer Endurance Club, and TriDot Coach Brandy Ramirez, the President and CEO of SheStrong, Inc. Jayson and Brandy, a cancer survivor herself, share some history of their organizations and how we can support fellow athletes in their fight against disease and fight to their next endurance event finish line. We hope this episode will educate and inspire you so that we might all support those battling cancer in some way. A big thanks to UCAN for being a long-time partner of the podcast! We are huge believers in using UCAN to fuel our training and racing. To experience UCAN's LIVSTEADY products for yourself, head to their website UCAN.co! Use the code “TriDot” to save 20 percent on your entire order. At TriDot, we trust 2Toms to keep us moving! 2Toms provides revolutionary products to prevent issues from chafing, blisters, odors and sweat. To make the switch to 2Toms, head to Medi-Dyne.com and use the code “TRIDOT” to save 20 percent on your entire order.

Learn more about Bill and his journey at:https://www.billcpotts.com/

On today's episode we are joined by two very special guests, Ashley Closson, who was one of our very first guests on the podcast (Addicts and Assholes with Ashley: listen here). Ashley gives us a life update and shares how one small step forward led her to where she is today. Joining Ashley is Madelyn Klein, a new guest who will be sharing her personal story and how her and Ashley's paths crossed with their involvement in the Leukemia & Lymphoma Society (LLS). Together, Ashley and Madelyn will give us insight into their journeys, LLS, and the VOY campaign. Ashley's mission to raise $50,000 by June 2nd in honor of her Dad is truly inspiring, and we'll discuss how we can all help support the cause. Link to Donate: https://pages.lls.org/voy/uny/alblls23/aclossonMore about Ashley:Ashley Closson, one of the first guests on the BBB podcast, is back to give us an update on life two years later and dive deeper into her cancer and philanthropic journey. Born and raised in upstate New York, Ashley Closson has a unique story, to say the least. She is happy to share her wins and failures on divorce, being a two-time cancer survivor, navigating changing your career when it isn't bringing you joy, and lastly, taking control of finding your happy ending no matter the cost. She is a graduate of the Fashion Institute of Technology for Interior Design and Fashion Merchandising. Her passion for helping others after her health battles has guided her to an account executive position for a local not-for-profit health insurance company. She uses her passion for helping others to motivate her to succeed in her career. She also spends her time giving back to the community by serving on the vestry (board) for her church, on an Emerging Leaders committee with a local chamber of commerce, as a member of the leadership team for the Leukemia and Lymphoma Society's Visionary of the Year campaign, and as a LLS first connection volunteer. When she isn't working or serving her community, you can find Ashley spending time with her close-knit family and her son, Bennett.More about Madelyn:Madelyn Klein was born and raised in Upstate New York and oversees the Visionaries of the Year campaign for the Leukemia & Lymphoma Society in Albany, NY. Madelyn's professional background is deeply rooted in sales, marketing, social media, and fundraising. Madelyn has a passion for giving back to her community by volunteering and hosting fundraising events for local organizations such as animal shelters and other non-profit organizations. She got involved with the Leukemia & Lymphoma Society as a volunteer back in 2018 when her father was diagnosed with an incurable form of cancer. She then left the sales world to work full time at the Leukemia & Lymphoma Society last year to spearhead the highest impact fundraising campaign in the Capital Region to help further raise awareness and funds for the organization that helped save her father's life. When Madelyn isn't working, she enjoys Pilates, going on walks with her dogs, and spending time with her loved ones.Connect with Ashley and Madelyn!Madelyn: @TitosMomagerAshley: @Ash_ClossConnect with Brianna!Instagram: @mombossinaustinLinkedIn: linkedin.com/in/briannademikeFollow the Podcast on Instagram: @badassbasicbitchLove the podcast? We would love if you would leave a review!

Listen to ASCO's Journal of Clinical Oncology essay, “At a Loss: Patient Deaths and Clinical Research Coordinators” by Dr. Hermioni Amonoo, a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. The essay is followed by an interview with Amonoo and host Dr. Lidia Schapira. Amonoo puts out a call for support for clinical researcher coordinators to manage grief after patient death in clinical trials. TRANSCRIPT Narrator: At a Loss: Patient Deaths and Clinical Research Coordinators, by Emma C. Deary, BA; Elizabeth Daskalakis, BA, Janet L. Abrahm, MD; Sue E. Morris, PsyD; and Hermioni L. Amonoo, MD, MPP (10.1200/JCO.23.00040) As clinical research coordinators (CRCs) working on health outcomes research in patients with hematologic malignancies, we frequently navigate a patient's chart to coordinate study appointments and collect clinical information. When opening a patient's electronic health record, a snapshot immediately appears on the screen with the patient's medical information: demographics, problem list, medical history, allergies, medications, and so on. However, there are times when the chart does not open immediately, and our stomachs drop. A small gray pop-up box that we know all too well reads: “You are opening the chart of [patient's name], who is deceased. Date of death: [date].” We dread that pop-up box. We feel shock, followed by profound grief for the patient and their loved ones. The three words in that one sentence pack an irreversible reminder that our workplace, the place we love, is the same place in which patients and families can experience their worst nightmare. Every time we wait the seconds it takes a chart to load, we hold our breath, hoping that box does not appear. CRCs, sometimes referred to as research assistants, conduct the day-to-day activities of a research study. In human subjects research, this often means performing chart reviews, calling patients to administer surveys, meeting them at clinic visits, or talking to them about different aspects of their treatment and recovery. CRCs like us are typically young, early 20s professionals, who recently graduated from college and are still trying to figure out their career aspirations. We may have previous research experience working in undergraduate professors' laboratories on organic molecules or with student research participants. Aside from volunteer experiences, we usually have not had professional interactions with seriously ill patients. CRCs are the people patients associate with the research study in which they have enrolled. Through frequent study check-ins and phone calls, we build relationships with patients and often chat about nonclinical matters. Patients tell us about their children, grandchildren, pets, daily life, hobbies, and work. The more we meet with study patients, the more we learn about the intricacies of their lives: how they met their spouses, how much they miss seeing their families, and what they love about their hometowns. Even after only a few encounters, we form strong bonds with many patients from a wide variety of backgrounds. As we follow them along their treatment journey, we find ourselves fiercely hoping the treatment works. When a patient dies, we cannot help but think of their life partner, husband, or wife, the friends they will never see again, their children, and their grandchildren. We remember their hobbies and the thoughtful ways they greeted us before appointments. We remember the numerous phone calls we made to remind them of our meetings. We remember the days they were smiling ear to ear under their masks and the days they felt so sick that they could not pick up their heads to look at us. As CRCs, we do not communicate with patients outside the study. We are not their doctors, nurse practitioners, or anyone who has direct involvement in their care. But, we accompany them as they ride the highs and lows of cancer treatment. So, after a patient dies, we often struggle to understand our own emotions and what role we played in their lives. We record their death for the study and are expected to move on, seamlessly, after discovering someone has died. Our role as CRCs may be tiny compared to those of other providers, yet each patient's death has a profound impact on us. We recall the first time we learned that one of our patients died. We became motionless at our desk, distracted and unproductive for the remainder of the day as our thoughts returned again and again to that unexpected warning box. We were hesitant to even speak to each other about how we felt. Thoughts of “I should not be feeling this upset” and “maybe I am overreacting” blocked us from processing or trying to understand our grief. These thoughts were isolating, and we were unaware that many of our colleagues could help us share this burden. Knowing that patients with serious illnesses die did not protect or prepare us for the waves of emotion we experienced when a patient in our study died. Some of us have had personal losses after which we also thought: “Maybe I do not have the right to be upset”— a childhood friend we are no longer close to dies, or we learn that a good friend has had a miscarriage—and our grief is confounded by our feelings of guilt. We experience disenfranchised grief1: grief that is not openly acknowledged, socially accepted, or publicly mourned. For us, there is no place to grieve with the patient's family or the clinical care team. Over time, our grief builds up, and it is hard to find a way to release it. Friends and family do their best to understand, but because they do not work in health care, they can find it difficult to grasp the complex emotions we experience. We seek solace with each other, but lacking coping mechanisms or clear direction, we ultimately bury our grief to continue doing our job. Oncology and palliative care clinicians routinely care for seriously ill and dying patients. To learn how they deal with their grief, we asked our Dana-Farber Cancer Institute study principal investigator and three palliative care clinicians (two physicians and a psychologist, who is a bereavement expert) how we could begin to process our otherwise disenfranchised form of grief. We learned that Dana-Farber Cancer Institute palliative care clinicians hold weekly bereavement rounds or remembrance2: a time carved out every week to read a poem or listen to a song and then share meaningful stories about each patient who touched their lives and had died that week. We adapted the bereavement rounds for our laboratory group of CRCs and principal investigators. We spoke about each patient we had lost, sharing the things that most affected us over the course of our interactions with them. We spoke of Jack (names are changed to protect patient identities), who was beloved by everyone in the clinic. His hearty laugh could be heard throughout the halls whenever he came in for a visit. On the last clinic visit before he died, Jack's appointment was delayed, and he sat in the waiting room for over an hour. When we offered to help find him a room, he stood up and offered a hug in gratitude. The memory of such a seemingly routine request stayed with us for weeks after his death. When we spoke about Jack and his family during these bereavement rounds, we were able to share the wave of grief that overwhelmed us, that grief we had kept suppressed for over a year. We also shared stories about James (names are changed to protect patient identities) and his wife; they met in college and had been together for more than 50 years. Throughout his treatment, James told us often how upsetting it was that his immunosuppression prevented him from spending time with his grandchildren in person. Our hearts broke thinking of his wife and the reunions with grandchildren that would now never happen. Surprisingly, speaking about patients in our studies who died felt like a welcome release; finally sharing these memories and the worries we had harbored since each patient's death was restorative. Bereavement rounds have been invaluable in processing the grief we experience throughout the year. We found ourselves wishing we had known of them sooner, although it would be hard for CRCs who do not work with palliative care programs to be told about them. Through our quarterly bereavement rounds, we have learned to foster healthy grieving processes, creating time to honor each patient and acknowledge their impact on us. This investment in our health and well-being has been crucial to maintaining resilience in the face of challenges that our job entails. We feel cared for by the larger program and know it is investing in us as whole people. Our professional development now extends beyond Health Insurance Portability and Accountability Act training and Collaborative Institutional Training Initiative certification to include education in bereavement, burnout, self-care, and compassion fatigue. Direct supervision and mentorship around grief and loss incorporated into our routine check-ins and meetings have been helpful, as well as an open door policy with our supervisors for informal support. We frequently debrief in response to challenging interactions or situations, including the death of a patient. The designation of this safe space has emphasized a culture of support in our team settings. Learning to lean on each other when faced with emotional experiences has become a core aspect of sharing regular study responsibilities, especially when a patient dies. One practical strategy which  has helped us is going on a grief walk. After learning of a patient's death, we stop work and take a 15-minute walk, either alone or with a colleague. We give ourselves the space and time we need to begin our grieving process. Losing patients is part of our job as CRCs, as it is for many health care providers. Implementing programs and routines to understand and lessen the emotional burden on us has helped us better navigate our duties while fostering the coping strategies we need to do our job well. We want to learn and to immerse ourselves in academic medicine, and to do this, we need the support of our research team and institutions if we are to navigate the grief we feel when our patients die. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Hermioni Amonoo, Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. In this episode, we will be discussing her Art of Oncology article ‘At a Loss: Patient Deaths and Clinical Research Coordinators'.  At the time of this recording, our guest has no disclosures.  Hermi, welcome to our podcast and thank you for joining us. Dr. Hermioni Amonoo: Thank you, Dr. Shapira, for the warm welcome and introduction. Dr. Lidia Schapira: Let me start our show by asking this very broad question, and that is how did this article come about? We normally have first-person reflections in Art of Oncology, but this is a group reflection pulled by collective first-person plural, and clearly, you played an important role. How did this start? Dr. Hermioni Amonoo: So as you know, my line of research is trying to understand the well-being needs of patients with hematologic malignancies who are undergoing hematopoietic stem cell transplantation. So this is a really seriously ill group of patients who we are trying to understand what well-being looks like for them in the midst of a serious illness and quite intensive treatment with several toxic side effects and a prolonged recovery. And so in doing this work, unfortunately, a lot of our patients, even in our trials, pass away either from their diseases or complications from the treatment. And so I have noticed over the past few years that a lot of my clinical research coordinators who are young, 20-something-year-old, freshly minted college graduates, who are very critical to the work that we do, have to grapple with the loss that comes with working with our patient population. A lot of these individuals take on these clinical research coordinator roles because they want firsthand experience with patients, but that is one thing. But then working with patients who you bond with, even from mundane conversations, and then having them die was a huge sense of loss and frankly, a bit of a surprise for them.  And so, as a psychiatrist, used to sitting with people in grief and helping them reflect different losses that they encounter, but I quickly realized that supporting my CRCs was a little bit more than even what my training had prepared me for and definitely, my training as a researcher hadn't prepared me adequately to be able to support these young clinical research coordinators. And so in our struggle, or I would say I've had a burden for this for several months, I would say a couple of years now. And so one of the ways that I struggle, I manage different burdens is to write about it. So I sort of shared the idea with my clinical research coordinators, a couple of them now, and they really caught on to the idea. And so we decided to share what our experience has been with this. And then I also reached out to a couple of colleagues in palliative care and the director of bereavement services at our cancer center to also support us, or support me to support our clinical research coordinator. So that's sort of how this idea came about. And that's a really long-winded response. I'm sorry. Dr. Lidia Schapira: It's so interesting to think about this, writing as a tool for processing a difficult experience is something that we often discuss with our authors for first-person narratives. What makes this entry and this essay so original, in my opinion, is that this is a group effort and you have so beautifully spoken about the need to, especially for these very young 20-something-year-olds, to process this very difficult experience of grief. And in addition to this manuscript, you speak here of doing this through some form of bereavement rounds, something that you've taken from a clinical setting where we find that it helps support people working with patients who are very ill and who experience a lot of losses to the setting of a research lab. Tell us a little bit about how that idea came about, how you're implementing this very original and useful tool in your own group. Dr. Hermioni Amonoo: It started out with, before instituting what we call remembrance rounds, my CRCs would typically call me whenever they heard of a patient's death. They will literally call my cell phone, I'll stop everything and sort of take a moment of silence with them and ask them how they were doing and check in via supervision and things like that. But it definitely felt inadequate considering the amount of pain that they experienced with the whole process. And so our palliative care teams have this remembrance of bereavement rounds every week. And obviously, on a palliative care service, they have a lot of patient deaths per week where pretty much every clinician on the team would get together for half an hour to an hour. You have different members leading these rounds where someone will share about a patient who had passed away, a memory or something about the patient, and the whole group will reflect on it.  For our purposes, we thought it would be great to adapt that for like a lab setting. Fortunately, we don't have a huge volume of patient deaths per week but we realized that a month or every three months we would have close to between five to ten patients who would die from our trials, which is, again, a lot. And so, in conversations with our Director of Bereavement Services and our palliative care colleagues, we picked that time frame every quarter to get together as a lab where the names of patients in our trials who have passed away would be shared. And different members of the team who have interacted with a given patient will share, like a memory, either from a conversation, a poem, or a song, or something that brought to life the individual as a way to just process and acknowledge the loss that comes with losing patients. And I think it's also even more critical in the lab setting because, unlike the clinical setting where there is some form of a closure because as a clinician you may be able to call the patient's family and you sort of have permission to do that. But in the research setting, my CRCs felt like once they recorded the patient had died, they had no business in calling family members or doing anything like that. And so it was helpful to create the safe space to process all of that.  In addition to the remembrance rounds, we also arranged with our bereavement services in the cancer center where there are actually cancer center bereavement cards where clinicians could write notes to families. And so our CRCs have started doing that as well, where we could use the cancer center template and if they wanted to, could write a note to the family as a way to share how they were feeling about the situation with the families as well. So that is something that in addition to bereavement rounds, we started doing which is also helpful. Dr. Lidia Schapira: I was very moved and I was very struck, as were the reviewers, by a few things in your article. One, is that you take responsibility for supporting your research assistants. Two, is that you take on what I will say is an almost mentorship role for helping them process this in a way that sort of still leaves them engaged with the content material and stimulates their growth as professionals. And hopefully, some of them will be future medical students, physicians, and maybe even oncologists and psychiatrists. In fact, our reviewers wrote that after reading your paper, they had implemented similar protocols in their own labs and that's pretty amazing. So tell us a little bit more about how your efforts, you think, contribute to creating a more supportive culture in general in our workplaces, both in the lab and research setting, but also this translates into clinical settings. Dr. Hermioni Amonoo: So I think maybe more so than others, I see my clinical research coordinators as really critical partners in the work that we do, especially in clinical research. They are the face of the trials that we do in some ways. They meet all our patients who are eligible for our studies. And they do spend a lot of time with them, especially in the longitudinal studies that we do, where there are multiple assessments. They are calling patients, they are speaking with them in waiting rooms, and they are really essential to a lot of things that we do. When I think about how much we compensate them monetarily wise, it really isn't a lot for really talented college graduates. And so I think, for me, I view an intangible way of making this whole experience worth it, based on how much they contribute to my research program, is to really mentor them. I think as an individual, mentorship has been very critical to my own career development, and working and mentoring CRCs is one way that I pay it forward.   And I think because that is very much a part of our lab and our team culture, the CRCs are also willing to go above and beyond and really contribute to the work that we do. Because there is so much that as a principal investigator, you can't always be with them 10 hours in the day that they are working. But when you really get them to latch onto the heart of what you're doing and knowing that they are also going to grow professionally and explore different things about medicine, in general, has been really rewarding. In fact, I've had research coordinators who came in thinking they wanted to do Ph.D. in psychology programs, but then in interacting with patients, they have expressed interest in potentially pursuing nursing. I have a CRC now who came in thinking one thing and is going to nursing school this summer. And so I think there's really a great opportunity to expose them to the breadth of clinical experiences like in medicine. And one way to do that is to be intentional about looking for opportunities to allow them to see things beyond what they even thought they wanted to gain out of the experience because we can't pay them as much.  Dr. Lidia Schapira: Let me tell you that after this podcast you will be getting emails from people who want to work with you. It sounds like you're an ideal mentor and so collaborative and so generous in your mentorship. It's amazing. I was also thinking, as you were speaking about the people involved with patients and families who are struggling through very difficult times and die, some of our staff, not the ones involved in research, but the people who book appointments and get to know the patients and listen to their stories, they also need a place to grieve and they need to be notified when patients die. And most of us don't have sort of a system or a process for thinking about that, and maybe we should, taking a page from your playbook here of thinking about all of the people who interact with patients and all of the people who are themselves impacted by what happens to these people we take care of and many of whom are so generous as to participate in our research studies. So let me end with a forward-looking question and that is do you have, as a researcher, any interest in studying this? Dr. Hermioni Amonoo: Again, thank you for your really generous and nice comments about the mentorship. And I totally agree with you that there is definitely room to care for a broader range of our clinical team, not just people who have hands-on clinical duties or interactions with our patients. And I think it's even more pertinent in these times post the COVID pandemic, where a lot of individuals who work in clinical settings and again, COVID being the great revealer, it sort of uncovered how a cross-section of hospital staff are really impacted by different difficult things that happen in the hospital. So I think there is a lot of room to even look at how different staff manage loss and grief of patients. And patients dying is just one form of loss that we all have to grapple with as clinicians. But I think it's an area that a lot of people haven't even considered before, and I think there's a lot of room to study the impact of some of the things that we are doing in a research setting. I am open to that. I would need collaborators to do that, because to be able to do it well, I think it's not like an area of expertise yet. I feel like I am growing in this space myself, which was part of the impetus for reflecting in this perspective. I know the director of bereavement services has also been open to extending this to other labs in our cancer center and so I am totally open to that. And if anyone is interested in exploring this in a more rigorous and robust way, as it does deserve, I think I'm open to collaborating with others to pursue this to its fullest.  Dr. Lidia Schapira: That's good for all of us. And my last question, Hermi, you've been so generous with your time, is this: if you look back or think back about your early days, your formative years as a student, or maybe if you also worked as a research assistant, did you have a mentor who took the time to listen to how these experiences were falling on your soul? Not just whether or not you showed up for work every day, but how you were thinking about this and taking stock of your own losses. Dr. Hermioni Amonoo: So yeah, I think I have had a village of mentors who have been really invested in me as a human being first beyond work-related interest, and I think that has been really instrumental. And I think my mentors have had to explore some of these topics with me because of my own personal losses and I think having family deaths over the course of my training. And so I've been really privileged to be a beneficiary of mentors who really focus on helping their mentees grow. Not just in a technical way or a career development or professional sense, but really being attuned to how much, for lack of a better word, someone being well in their soul and in their mind, really is interconnected to how well they do professionally such that you don't burn out or lose the sense of joy in the things that we are doing. So I've definitely been a first-hand beneficiary of that, and my psychiatric training probably also makes me a little bit more attuned to those things than probably in other fields of medicine. Dr. Lidia Schapira: Well, thank you for a wonderful conversation. Thank you for the work that you do and for sending your work to Art of Oncology, the JCO. So until next time, thank you all for listening to JCO's Cancer Stories, The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcast.  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. Hermioni Amonoo is a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute.  

Listen to ASCO's Journal of Clinical Oncology essay, “Guilt and Gratitude,” by Dr. Ilana Hellmann, attending physician at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann explores the guilt surrounding the toxic consequences of chemotherapy and her gratitude for the patients who continue to connect with their physicians, even after treatment. The interview starts at 06:15 TRANSCRIPT Narrator: Guilt and Gratitude, by Ilana Hellmann, MBBCh (10.1200/JCO.22.02000) It was the end of a long day in clinic. There was a knock on the door to my office and my assistant's head appeared: “Avi called and asked for an appointment.” The look on her face mirrored the thought that immediately went through my mind: That cannot be good. I asked her to fit him in to one of my clinics in the next few days. I had first met Avi about 5 years previously. He was then a 29-year-old computer programmer and recently married to Talia, an artist. He was tall, skinny and stressed. She was short, stout and happy, an eternal optimist. They had no children. He had had an irritating cough, then developed night sweats and by the time he was diagnosed, he had advanced stage Hodgkin lymphoma: stage IVB with all the poor prognostic factors on the list. He needed treatment quickly. We planned to give him the escalated bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisone protocol-nasty stuff, with lots of side effects, but with good results. I explained it all to Avi and Talia. Aside from all the usual suspects: hair loss, nausea, pulmonary and cardiac toxicity, bone marrow suppression, and secondary malignancies, there are high rates of infertility, especially in males. We sent Avi to collect sperm samples before starting treatment, and despite numerous valiant efforts, his samples were all of poor quality. There was nothing there that could be used in the future. His treatment course was not easy. The side effects were, from my point of view, mild. He had no life-threatening infections and no admissions because of side effects. But for Avi, it was awful. He described feeling like being run over by a truck. He stopped working, and things were strained between Avi and Talia. She found it very difficult to deal with his constantly long face, and he could not stand her persistent optimism. At one point, I remember a conversation close to the end of his treatment. I said something about how we were nearly there, to which he replied, “I started this treatment when I was young and now I am old.” He finished his chemotherapy and thankfully went into complete remission. I breathed a sigh of relief and smiled at Talia, both she and I thinking that now Avi would recover. Months went by and physically, Avi recovered. He went back to work and started exercising again. Then as the months turned into a year and then another year, testing revealed what was initially feared. Avi was infertile. The conversations in my office between Avi and Talia were tense and painful. Talia wanted to use a sperm donor. She wanted a child of her own and the experience of pregnancy and birth. Avi felt that he could not be father to a child that was biologically hers but not his. He wanted to adopt. Neither one of them was prepared to compromise and despite the interventions of a wonderful psychologist and then also a marriage counselor, it was a downward spiral. Then, Avi missed a follow-up appointment and stopped coming all together. It had been a good 2 years since I had last seen Avi when the assistant knocked on my door. The next morning I saw Avi in the waiting room. The woman next to him was not Talia but his mother. I concluded the obvious: divorce. The thought that now he was in relapse (why else would he need an appointment with me?) and would have to go through salvage therapy without her was paralyzing. I called him in to my office. He looked great! He greeted me with a big smile and a hug. We went through his medical history. I examined him and looked at his laboratory results. Everything looked perfect. Avi was relaxed and chatty, asking me about my work and my kids. I was going quietly crazy waiting for the punchline. I took a deep breath and asked him: “How's Talia?” He smiled and pulled out his cellphone. He showed me picture after picture of a beautiful 3 month old baby girl. “This is Lia,” he said. “I thought you deserved to know.” The tears sprang to my eyes. “How?” I asked. He explained that he had eventually acquiesced to Talia's pleas. She became pregnant with sperm from a donor. He said that the pregnancy for him was nothing short of terrifying, but that as soon as Lia was born, it was obvious to him that she was his. I was overwhelmed with emotion. I realized that I had been suppressing a tremendous feeling of guilt around what had happened to Avi (and Talia). The feeling of guilt was not foreign to me. I had experienced guilt around the death of a patient or around mistakes, real or perceived, that I had made. Avi, however, was cured of his disease, and I had done nothing wrong. This was an altogether different kind of guilt: one less spoken of and less obvious. The knowledge that we as physicians are able to cure patients from cancer is humbling. The fact that we cure them but leave them with life-long and life-changing side effects is devastating. I do not know how much Avi understood what he had done for me by coming in that day. During that visit, he was treating me and not the other way round, and the healing effect was enormous. I possibly overdid it in my reaction to Avi in my office that day. But as he got up to leave and I thanked him for taking the time to share his news, I think he knew. In the years since, I have learned to ask patients to call me when they are unwell, but to please remember to also call or text me when they are feeling better. There are many who have taken this very seriously, and those messages are often a tremendous source of inspiration and reassurance, especially on difficult days. To Avi and to all my other patients who take the time to call to say they are feeling better or to share some piece of good news, who are able to see the person in their physician, and understand my need, I thank you. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You'll find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. Today, we're joined by Dr. Ilana Hellmann, Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel. In this episode, we will be discussing her Art of Oncology article, 'Guilt and Gratitude'. At the time of this recording, our guest has no disclosures. Ilana, welcome to our podcast and thank you for joining us. Dr. Ilana Hellmann: Thank you for inviting me, I'm delighted to be here. Dr. Lidia Schapira: It is our pleasure. Ilana, I'd love to start the show by asking you if you can recommend to our listeners any recent story or book that has moved or inspired you. Dr. Ilana Hellmann: So, I read to escape, I don't read medical books, I don't watch medical programs. And I heard someone recently recommend, on one of your podcasts, a book by Anthony Doerr, called, All the Light We Cannot See, which I absolutely love - it's one of the most beautiful books I've read in the last two or three years. And I've just finished his next book which took him years to finish, it's a 600-page beautiful book called, Cloud Cuckoo Land, it has an interesting name. Have you read it? Dr. Lidia Schapira: I have not read that one. Dr. Ilana Hellmann: It's a wonderful book, and if you read the last one, it's no less inspiring with lots of different characters over different time periods, and they're all connected to each other by a story, by a fairytale, and it's a beautiful book. I enjoyed it tremendously. Dr. Lidia Schapira: Oh, thank you for that. I have a book for my next trip now. Dr. Ilana Hellmann: Wonderful. Dr. Lidia Schapira: Let's talk a little bit about writing in Medicine, and writing, as a way of sharing our stories with our colleagues and our trainees. What was the motivation for you to write this piece? It seemed to me, when I first read it, that it took years to put it together. But what was the driver for sending it out to the world? Dr. Ilana Hellmann: It's quite a strange story. In fact, what happened, happened a large number of years ago - the baby is 10 today. I wrote it just after she was born. It was a long, long time ago, when I saw the patient and I was overwhelmed by what happened, and I sat down and wrote something and put it in a folder on my computer, and forgot about it. What then happened, as you say, that it took years and years to finish, is that I got a call from the computer tech people in the hospital who said, "We're coming to give you a new computer, and if you don't clean up all these things on your desktop, they're going to get lost." And I found this folder that I'd forgotten about completely, and I read it and wasn't finished. You know, I hadn't thought about it in all those years. The end part about what it had done to me over the years, and the things that have changed in my practice because of what happened came later. I think we, as doctors, not just oncologists, doctors in general - we see bunches of people during the day, and one goes out, the next one comes in, and another goes out. You know, you don't have time during the day to process what you're feeling, and you just have to get past it and go to the next patient. I find that occasionally, at the end of the day, I think, "Wow, I have to write this down." And the truth is that I've just about never shared anything of the things I've written. I work a lot with students, and we encourage students to write narratives, reflective diaries; you know, I thought, "Wow, it's kind of hypocritical of me to tell them what a wonderful thing it is to do and not share something like this with somebody else." And that's how it happened that I shared this particular piece. Dr. Lidia Schapira: So, before we go into what I think is the essence of the piece, tell us a little bit about what it's been like for you to share your writing with your students now. Have they had a chance to comment and react to this piece? Dr. Ilana Hellmann: My students haven't seen it yet. My colleagues, our residents, have all seen it, and it's been quite amazing. It's a side of us that we speak of less. There are things that are left behind closed doors, and it's been wonderful. I think people who've read it have then come to me privately and said, "Wow, that's an amazing story, and I'm so glad you shared it with me. And that's an amazing outlook, what you thought about it." So, it's been quite something. My students have been on holiday the last two months, we're just starting again with all of them, and I'll share it with them once it's published. Dr. Lidia Schapira: I think they'll appreciate it. But let's talk a little bit about this, and you just said there's so much that happens when we close the door. I don't want to trivialize the message in your essay and say that it's just about self-care, because I think it's about much more than that. So, let's talk a little bit about what it felt like to you to be on the receiving end of this gratitude. Patients often express that they are so grateful for what we've given them through our treatment, and, you know, an extension in life, or an improvement in symptoms, but it's rarer for us to really have and feel that compassion emanating from a patient, and it feels so good. Take us there. Tell us a little bit about what it felt like. Dr. Ilana Hellmann: Absolutely. I completely agree with your sentiment. As I wrote, I had no idea what was going to happen when he walks through the door. I expected something completely different. When he pulled out his cell phone and there were these pictures, it was just overwhelming. I couldn't stop the emotion; it was just amazing. And I knew that he'd come for me, literally. He'd come to say to me, "It's okay, I'm fine. I've gotten on with life, everything is good." I hadn't seen him in two years. He then disappeared, and I didn't see him again until he needed a letter for something, or other. And I've actually seen him again, I saw him two weeks ago because of this essay. And after that happened, I thought, "Wow." As you say, it's not just self-care, it's way deeper than that. And in a way, we are trained to look after our patients. The patient is the one with the disease. We need to think about what the patient is feeling, we need to make sure they don't have too many side effects and long-term stick to what we give them. And we are not trained to look after ourselves, or certainly, to ask our patients to consider what we feel, or whether what they're going through has any effect on us. But as I wrote, in the years since, I had a patient recently with lymphoma, and she was very, very unwell in the beginning, a young lady, she dreamed about going for a walk on the beach. And over the first few months that she was treated, she was very unwell and she could barely walk, and I said to her, you know, she kept saying to me, "I'm going to get to that beach. I'm going to get to that beach." And I said to her, "You know, when you get to that beach, it would be so wonderful if you could let me know." And when she got to the beach, she sent me a WhatsApp-- all she sent me was a picture of the waves rolling onto the beach. As you say, I was so grateful for her sharing that with me. And I think, and maybe this is the bottom line, that exposing that side of us to our patients makes us more human. You know, we're not just the people who hold their hand and give them their chemotherapy, and hopefully, help them get past whatever it is that they're ill with, but we are people. People like it. When I give patients my email or my phone number, I say to them, "You know, when you are not well, or whatever you need, let me know. But if you're feeling better, I'd love to hear that too." And I've never, ever had anybody dislike that. Most of them say, "That's wonderful. Absolutely, I'll let you know." And then, as I wrote, they take it very, very seriously, and it's such a wonderful thing. You know, in amongst the 20 emails of, "I've got terrible nausea, and I'm constipated, and another lump has appeared in my neck, I need a letter for some insurance," and so on, and so on, then to, "I just wanted to let you know that I'm really doing okay." Or, "Whatever you gave me, it feels better." And again, really, I think it just gives the patients a bit of a look into the human side of their physician. Dr. Lidia Schapira: And it definitely feels so healing I think for us. I was struck by your account when you talked about the fact that people walk in and out of your office, and you're constantly prepared for emergencies. Basically, our clinical time is often responding to all of the challenges and the problems that patients bring to us, because we deal with people who are so ill and it's very stressful, so, it almost seemed to me that you were surprised when what happened in that encounter was just meant to be a gift to you - an expression of gratitude, and that seems to have had a huge emotional impact. And as you were talking, I wondered, do you and your colleagues share these stories? The stories, the photos of your patient getting to the beach, and the messages of gratitude that often come months or years later? Dr. Ilana Hellmann: We do, we do. You know, as the years have gone by, technology has changed. There used to be that board in the doctor's room, where a patient would have written a letter, and would get pinned on the board - those days have gone. Today, patients, some of them write letters, and then people take a photograph, and we have a WhatsApp group, or an email-- I'm sure there was one like that, yesterday, from one of my other colleagues, who got a beautiful letter from a patient. Absolutely, absolutely. In the same way that when there's bad news about a patient that everybody knows, it's shared, when there are good things about when patients thank us, or if they're just better, you remember there was so and so who was really doing unwell. Well, you know, things are looking better. Definitely, definitely, we share, for sure. Dr. Lidia Schapira: So, how do you think this experience affected or changed your practice and how you treat in future patients? Dr. Ilana Hellmann: When I called Avi, the patient in the essay, and I hadn't spoken to him for many years-- he disappeared from follow-up, and it happens - young patient, he had better things to do than come and see his hematologist. When I called him, immediately, he recognized my voice when I said, "Hello", and he was very happy to hear from me. And when he heard why, and I sent him the piece, he was overwhelmed with the effect that it had on me. Immediately, we made a date, and he came in for an appointment, and we chatted about it. He had a lot to say about the essay. He was very, very stunned, in fact, by the accuracy, from his point of view, of how I had described him and his wife, and what they'd gone through, and what had happened, and he wanted to know if things have improved. You know, back when he was ill, it wasn't so easy to find a psychologist for him. It wasn't something that was-- now, we have two psychologists who work with us, and things are a lot better. But his biggest question to me was, he said, "You know, I never thought about your side. It never occurred to me that what was happening to me was affecting you." He said, "You know, are you counseled? Does somebody look after you?" That's a difficult question. It's not such a comfortable question. I don't what you would answer to that one. But certainly, not officially. There's definitely no special time to work through-- you know, things come up when we have meetings, but it's not as if I have sessions to say, "Oh, I had a bad day, and this is what happened, and so and so, and whatever," but I share more with my patients. They're sad, I say, "Yes. It makes me sad too." I used to think maybe it made me weaker, or it was unfair to the patient to show them my emotion, and I've learned that I think it's absolutely fine, to a certain limit, to show them that I'm human, and I'm with them, and that's okay. And as I say, I'd ask them specifically to share good things with me, and not just bad things. And it's something that I tell my residents and students, I say, "Even people who are unwell have good moments, and we need to encourage them, and also enjoy them ourselves." Dr. Lidia Schapira: I think we could talk for hours, and I sincerely hope that the listeners will talk with their colleagues - so, with somebody else about these same issues. I think it's a fabulous conversation. I'm not trying to evade answering your question of what I would've said, or what I would say; I had an almost transformative moment many years ago when I was a young oncologist, and a patient who was incredibly kind and tuned into me, who had metastatic cancer, saw my expression when I walked in the exam room, and she said, "You're having a bad day." And just that moment of empathic connection, when she recognized that I was under stress, I clearly showed it, was enormous for me. And I felt such deep compassion from her and was able to then turn this into a self-compassion moment, and then I sort of reset myself, and we had a good visit. But since then, I've been much more aware of the fact that our patients do also pick up some of these feelings. And when there's a good connection, their presence can be, and feel, very healing for us as well. And the answer to the question of, "Do we have psychologists? Do we need therapists?" I think is one that we as a collective group, or as a tribe, should often ask ourselves. What do we need? How do we vent? How do we unload? How do we share, and how do we get that social support that we need to do this difficult, stressful work, in the same way that we think about the mental health and well-being of our patients, as you so beautifully pointed out? So, I thank you very much. I think that as the Editor, and the readers who first looked at your essay, we were very moved by this sentiment that you have about the deep connection we feel, and how much we wish our patients well, and how grateful we are when they tell us that they are well. So, I wanted to give you an opportunity to finish the podcast with a thought or reflection. Dr. Ilana Hellmann: I think we don't reflect enough. Today, we teach students to think reflectively - "I saw something, it meant something to me. What does it do with me?" But it's not something I was taught, or it's certainly not the regular kind of discussion that happens, and that I think writing things down is so therapeutic - you think about something, you write it down, you read it again, you come back to it, as this happened to me, years later. It's a beautiful process. I would recommend to people to just try - when something happens, to just sit down with a piece of paper-- well, nobody sits with a piece of paper, in front of a computer and write it down. Dr. Lidia Schapira: Even if we don't have an IT person coming to give us an ultimatum, they're going to clear everything on our desktop by tomorrow. Dr. Ilana Hellmann: Right. Absolutely. Dr. Lidia Schapira: Until next time, thank you for listening to JCO's Cancer Stories. And thank you, Ilana, for a wonderful show today. Dr. Ilana Hellmann: Thank you. Dr. Lidia Schapira: Don't forget to give us a rating or review wherever you listen. Be sure to subscribe, so you never miss an episode. JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.   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. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel.

Series 3 of our podcast is Finally here‼️

In her captivating 2015 New York Times bestseller, "The Shift: One Nurse, Twelve Hours, Four Patients' Lives," Theresa Brown offered readers an eye-opening glimpse into a full day at her hospital's cancer ward, providing a compassionate view inside the complex inner workings of our healthcare system and the individual struggles of her patients. Now, Brown has returned with an unprecedented look at this system from the viewpoint of a cancer patient she had never encountered: herself.  On this episode of Big Blend Radio, she discusses her new memoir, "HEALING: When a Nurse Becomes a Patient," that shares her intensely personal story and presents an honest – and rare – look at struggling with the illness while navigating the maze of American health care from the unique standpoint of both a patient and a practitioner.  More: https://www.theresabrownrn.com/ 

"Wall Street doesn't believe in this target," by Dario Altieri. A scientist shares his 12-year journey that led to the discovery of a drug now in clinic.   TRANSCRIPT Narrator: Wall Street Doesn't Believe in This Target by Dario C. Altieri, MD (10.1200/JCO.22.00180) March 2, 2009. Just published in the Journal of Clinical Investigation.1 And we even got the cover. Twists and turns of heat shock protein-90 (Hsp90), the chaperone, the evolutionary capacitor. Great name and important cancer target. People smiled when I talked about this at the Hsp90 conference. No, no, really there is a lot of it in mitochondria, and only in mitochondria of tumor cells. And, I don't know why, but Hsp90 drugs don't touch it: somehow, they don't get to mitochondria. So, I made my own. Took an old Hsp90 inhibitor, 17-allylamino-17-demethoxygeldanamycin and attached it to triphenylphosphonium, a carrier that basically gets anything into the mitochondria. No, of course, I didn't do the synthesis in my laboratory. What do I know about medicinal chemistry? Outsourced it. Like sneakers and sweaters. And after three months, there it was: an Hsp90 inhibitor that only goes to the mitochondria, causes aggregation of a lot of proteins, and kills tumor cells in minutes. Makes sense, right? Mitochondria must control protein folding, especially in cancer, and they do it with chaperones. Inhibit the process and tumor cells can't cope. Normal cells don't seem to mind. So, strong preclinical activity, and against a lot of different tumor types. Better than any other Hsp90 inhibitor. Good safety. Totally different mechanism of action. And even a cool name, Gamitrinib. Tired of curing mice. What if this were to work in people? Ideas are made in academia; drugs are made in companies. Okay, fine, then I'll launch a startup, spinout, whatever they are called. The (former) doctor-turned scientist now turns entrepreneur, and then captain of industry. Problem is, I am not like that. More like an (aged) boy scout. The inner soapbox says: it belongs to the American taxpayers; they funded it; it's theirs. Excellent start. What else? If doctors and scientists become businessmen (or businesswomen), who will take care of humanity and discover new things? Perfect for a campaign ad. Sold. Bring it to the patients solely from academia: no pharma, no biotech, no investors, no nothing. Soapbox meme for the day: Yes, we can. It's going to cost. So? I'll write a grant, that's what I do for a living anyway. And the fact that I know zero about drug discovery? Or drug development? Laboratory-Clinical Transition Award from the Department of Defense. Great title. Three years of funding. Perfect for me. Pass-through money, nothing for the laboratory, but it pays the bills of outsourcing. First things first. Synthesize Good Laboratory Practice (GLP) Gamitrinib. Already getting a pretty good hang on the acronyms. Hey, we made this drug lots of times before and has never taken this long. It's almost a year and counting. The Department of Defense (DoD) is on my case because I am already behind. What's going on? Yes, I understand that we don't make anything in this country anymore. New import permits that need to clear the Indian government? The what? This is just a chemical, not an international incident. Yes, I get it, nothing I can do about it. My new job is mailman. And telephone operator. Finally shipped the GLP drug for the toxicology. Two animal species, says the US Food and Drug Administration (FDA). Rats and dogs sound good to me. Should I feel sorry for the dogs? Rats not so much. But what if Gamitrinib poisons the mitochondria in the brains? Or hearts? Wait, you said it's just perfect? Animals are doing great, all of them. And no toxicity at all, like giving them…water. Wow, that's some news. Feeling quite pleased with myself. See? I said it all along: mitochondria are wired differently in cancer. That's why the drug is safe for normal tissues. Maybe I should write a review article about that. Serious boost of the citation index. I am sorry, what? Yes, of course I know that the drug is purple. Okay, you filtered it before giving it to the animals and instead of purple it turned white? And you did that to all animals. For the entire time. Oh, what do I think it means? I think it means that you filtered out the drug and we have been giving animals…water. Yes, I get it. I need a new formulation. And start over. Note to self: find a new Contract Research Organization (CRO) that doesn't give water to the animals. Formulation experts. Big pharma ex-pats who now have their own CRO. Everybody is an entrepreneur here. Is this drug oral? Nope. Is it soluble in water? Not at all. So, it's an intravenous (IV) infusion? Yes, that's what it is. Sorry, then it's not a drug. It's not? And what about things like, you know, paclitaxel or doxorubicin? Aren't they also insoluble and given IV? Last time I checked, we used them for half a century and saved millions. Oh, now we think differently? I see, Fail Fast: that's how we think now. And mine, whatever it is if it is not a drug, has already failed. Nobody likes to take risks. Soapbox meme for the day: If nobody takes risks, how do we make progress, exactly? So, maybe I am in good company: paclitaxel and doxorubicin would also Fail Fast today. It's doable. Nobody likes it but it's doable. Sterile-filter the emulsion components and then bring the particle size below 200 nm. Nice. How do I do that? With a microfluidizer. And why nobody likes it? Oh, because the microfluidizer is a dirty machine and where you make Good Manufacturing Practice is called a clean room. Impeccable logic. But a place in California may do it. For a fee, of course. Oh, and you have to buy the machine. Buy what? Or lease it, whatever. People may not like it, but the whole thing works like a charm. Except, of course, when the microfluidizer stops for no reason in the middle of the run. Media fill looks good. Drug is stable for months in the new formulation. Release testing coming together nicely. I am running out of money. Burned through not just one but two DoD grants and all my research kitty. Nothing saved for the swim back: talk about risk-taking. At least the repeat toxicology is paid for and looks good. The drug, the real thing this time, is safe. They even did ECGs on the dogs. Thank goodness I didn't have to read those, but they are normal: no QTc liability. Can't drop the ball now, but I really need money. Here is how you do it: silence the inner soapbox and enchant the big pharma suits that are coming over. Use the right words. It's not early stage anymore. Asset totally derisked. Sure it's ready for prime time. It works. I am a natural. Maybe I should have done this before. A lot of nodding around the table. The suits must be in awe with the great pharmacokinetics, long half-life, and fabulous safety. A hand goes up. I am sorry? Sales data? Sales of what? What is the unit price? No, no, no, we are not there yet. I haven't even filed an Investigational New Drug (IND) application. Something different now. Analysts who advise big-time investors. They don't wear suits. Sweaters for sure. Maybe black tees a la Steve Jobs. They like new things and totally live by risks. Sounds like my crowd. And don't forget, they can get tons of money from people who already have tons of money and want to make even more money. My crowd? Voices out of a polyphone. Yes, it is Hsp90. Yeah, the chaperone. Sure, I know, it has been around for a long time. But this is a completely new story: nobody ever tested a cancer drug that goes to a subcellular organelle: that's really where the action is. Yes, Hsp90. And mitochondria, they used to be bacteria two and a half billion years ago, but they turned out to be important in cancer. I know that too, Hsp90 drugs didn't fare well in the clinic. Lot of toxicity, basically no efficacy. Yes, very unfortunate. But this one has a completely different mechan…Sure, I would like to hear that perspective. I am sorry, did you say, Wall Street doesn't believe in this target? Triaged the first time but funded on the resubmission. Could have been worse. This one is a grant from the National Cancer Institute. And a nice award from the Gateway Foundation is coming too. Enough to pay for the clinical trial. Single site, standard phase I. Accelerated dose escalation. Up to 35 patients with advanced cancer. All comers. Drug vials ready to go. And a fantastic clinical investigator to run the trial. You really don't want me in the clinic. The only thing missing is IND approval. Right, there is that. No, not a commercial IND, investigator-initiated IND, thank you very much. The FDA people are the nicest in the world. Super-helpful, don't believe otherwise. Or maybe they just feel sorry for the clueless applicant. Thirty days to respond to the questions. Totally getting a promotion to a higher rank of telephone operator. And publisher of FDA modules. And certifier of United States Pharmacopeia (USP) . recommendations. And fixer of Chemistry, Manufacturing, and Controls deficiencies. Oh, and let's not forget the specs for polytetrafluoroethylene filters. Then the examiner mutters two words at the end of a phone call. Good luck. Then, nothing. No more questions, e-mails, or phone calls. Right on the thirty-day mark. Were you expecting this? It's a letter; it says study may proceed. What would the day look like? The first patient to be dosed. Maybe I should go to the clinic: it's in town, not far from where I am. I don't think I can pass muster as one of those confidence-inspiring docs in pharma ads. But I do well as chief executive officer. The cufflinks look good, and so do the shoes. I can impress the family. My Italian accent can pass as straight from South Philly, so I have that also going for me. And I can more than hold my own if I need to talk about Philadelphia Eagles football and worries with Jalen Hurts' arm for next season. I used to be good with my patients. Or at least I convinced myself of that. Yes, this is an experimental drug straight out of our backyard, right here in Philadelphia. No, I don't know if it will work, but I sure hope it will. And thank you, thank you so much for being part of the trial. What if I make these people even sicker than they are? I took an oath a long time ago. Anyway, I know the literature on phase I studies, chances are it just won't do anything, so nobody gets hurt and I am finally done with it. I never thought this moment would arrive. There is none of that. January 10, 2022. It's just a late-night e-mail on the anniversary of my mom passing from lung cancer. Hey, the first patient did great at the starting dose of Gamitrinib. No problem whatsoever. The next patient will now get twice the dose. I hope we get that started this month. Happy new year. And that was that. Twelve years, 10 months, and nine days from that Journal of Clinical Investigation paper.1 Affiliation: 1The Wistar Institute, Philadelphia, PA Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology. I'm Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. And I'll be the host of this show. Cancer Stories is brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org. With me today is Dr. Dario Altieri, president, and CEO at the Wister Institute. We'll be discussing his Art of Oncology article: Wall Street Doesn't Believe in This Target. Our guest is a named inventor for patent number 2,699,794. Titled: Mitochondria Targeted Anti-Tumor Agents. Dario, welcome to our podcast. Dr. Dario Altieri: Thank you so much for having me, Lidia. It's a great privilege. Dr. Lidia Schapira: My first question to you and to our authors is this, people who enjoy writing are usually also readers, what are you reading now? Dr. Dario Altieri: Well, absolutely it has been a passion of mine since the floods. I am an absolute avid reader of novels, and history, in particular, contemporary history and modern history. Those are my favorite topics. Dr. Lidia Schapira: Do you read in English, Italian, or other languages? Dr. Dario Altieri: I typically read in English, even though some of the Italian literature is best read in the native tongue. And so, I am still attached to that. Dr. Lidia Schapira: You're clearly a very accomplished scientist. But tell me a little bit about your writing in this particular area in what I'll call creative nonfiction. How has this writing helped you perhaps process experiences or communicate with others? Dr. Dario Atieri: It has been, it's been a passion of mine for a very long time, I think. In finishing up college, of course, my major was contemporary literature and philosophy. The question was whether to continue on in a classic literature career or go to medical school, probably the wrong choice was made. But it has remained with me for a very long time, and it's a form of expression that I truly enjoy. In writing, this particular contribution was a bit transformative for me. It doesn't happen every time that you write a scientific article to express a little bit about yourself and your passions and dreams. Dr. Lidia Schapira: Let's talk a little bit about your passions and dreams in this article. You described an intensely personal journey of 12 years that led to the discovery or the availability of this drug now in the clinic. When did you think that you wanted to share this story with your colleagues? And tell me a little bit about the process of writing this article? Dr. Dario Altieri: It has certainly been a roller coaster experience. I would like to describe it as life-defining and life-changing. I've learned so much and so many things, not just about the process, but also a little bit about myself. I recognize reaching the clinic, especially in a phase one trial, is really just the beginning. But for me, as a basic scientist, somebody who has seen his last patient in the 13th century. As a basic scientist, that was a little bit of a milestone, and I wanted to share what it took, the experiences that I lived through, especially with our youngest colleagues, scientists, and doctors, starting their own careers in oncology, whether it's basic research, clinical research, translational research, I really don't think it matters. And so, issues of resilience, staying the course, passion, and not really giving up are the parameters that I had hoped to convey with this contribution. Dr. Lidia Schapira: In your article, I was so impressed by how you used humor, often self-deprecating humor, and the particular narrative style and writing style that you chose and defended as you were revising it. You know, this choppy phrasing, a staccato, and you said, this is what it feels like, how can I pack it into a small number of words and describe it all? Tell us a little bit about how you allowed your imagination to take over and how you found the proper voice and style for this particular narrative. Dr. Dario Altieri: Again, it's been a thrilling experience and it's been a thrilling experience to answer to the editors and the reviewers of the JCO, who provided incredible insightful comments. The challenge was, how do I tell a story without sounding obvious, fright, or expected, and more importantly, without sounding boring? And I think to paraphrase one of our reviewers about this journey. What the reviewer said, the author, that would be me, has encountered many of the absurdities of the path in drug development, something that we don't talk about too much because it's been the realm of a drug company for the longest time. And so, I wanted to try to capture that absurdity in a positive way. Things that the reviewer indicated, may be second nature to the pharmaceutical industry, but for academic investigators, that's been publicly funded for 30 years, is not second nature and is unusual, and is a world all in itself. And so, that was the impetus of trying to use literature advice on short sentences that are really intended to convey the impression of the moment that was what I tried to accomplish. Dr. Lidia Schapira: Well, you certainly picked a catchy title, and we have not published this sort of article in Art of Oncology before. For our listeners, tell us a little bit about why Wall Street doesn't care about your discovery? Dr. Dario Altieri: Unfortunately, I think, I mean, I don't know for sure. But I think that dealing with this particular molecule, heat shock protein 90 in the clinic has been difficult. Hsp90 has long been recognized as an important cancer target. There have been several generations of small molecule inhibitors that have been tested in the clinic. And unfortunately, I hope I'm not offending anybody, but unfortunately, the clinical results of those studies, and some of them moved all the way to really large phase two trials have been disappointing. And so, that is the idea that perhaps this was a dead target. And therefore, trying to leverage industry or biotechnology interest around it was quite a remarkable challenge. Dr. Lidia Schapira: What message do you want the young investigators to take away from your story in terms of the collaboration between academia where thoughts start, as you say, in your article, and all of the rest of the partners that you actually need it to bring this discovery and this idea to fruition? Dr. Dario Altieri: Lydia, this may sound trite, I really hope to convey one simple notion. It's not even a message, it's a very personal account. And that is don't give up. If you have run the controls. If you have done your experiments enough time. If you're convinced of the results, if you explore alternative explanations, and you keep coming back to the same conclusions, go for it. That has been a little bit of my own personal experience and if there are things that you don't know about, that's perfectly fine. Actually, that is the fun of the process, and the things that I didn't know about drug development, I can fill in the encyclopedia. I've learned some of them through people who have been doing this for a living, for a very long time. And that has been truly inspiring for me, a life lesson and professional lesson about how we can think of a drug target that has been discounted and remain true to the core value of strong basic research and try to advance that to the clinic, whether this will ever become something useful for our patients? I don't have the faintest idea. I certainly hope so. But that would be the experiment that is being done right now in the clinic. Dr. Lidia Schapira: In your article towards the end, you just give us two little glimpses into something that is personal and meaningful to you by telling us that there's an anniversary of a loss, the passing of your mother from cancer. Can you tell us a little bit more about that, and why you chose to put that sentence just where you did? Dr. Dario Altieri: I didn't know if anybody would have noticed, frankly, so I appreciate you bringing it up, Lidia. It's been a very personal journey for me as well. Both my parents died of lung cancer. They were a different generation. Both were heavy smokers. I remember those dates very well and I remember the void that they're passing is created. And so, I thought it was an interesting circumstance, that in fact, the first patient was enrolled in a clinical trial, the notion about that and of course, I am technically conflicted. So, I am not supposed to know anything about what is happening in the clinic. But it was interesting that the first notion about the first dosing came on that day, on January 10. Dr. Lidia Schapira: Well, I'm sure other readers will notice that too, the timing of that in the article and the fact that there was some emotion implied, I think, in how you chose to end your story by saying that this had happened in the clinic, but somehow, you were not there, that you had to be removed. Tell us a little bit more about that, about why you needed to be removed from the clinical site and why do you talk about yourself as a former doctor? In my mind, once you are you always are, but somehow you feel that you need to make the distinction. What does it all mean to you? Dr. Dario Altieri: Well, Lidia, let me just say you don't want me in the clinic right now. At 64years of age, like I said that the last patient was a very long time ago. I have to say, sometimes I miss those days, just as a personal account. I need to be removed because I'm technically conflicted on the trial, I was the IND holder, and then the FDA asked me to transfer the IND to the clinical investigator as proper because I'm not involved in patient care or research, in this particular case. And technically, because I am the inventor on a patent, I could potentially stand to benefit financially from the results of the trial, something that is certainly not on my mind, but that I have been reminded of. And so, I try to stay away as much as I can. Obviously, I think about this every day. But whatever information I can gain, that I can gather from my colleagues across town will be wonderful, but I'm not the one initiating those calls. Dr. Lidia Schapira: So back to the humorous side of your essay, you say that you've learned to be a telephone operator and a mailman, and a whole bunch of other things. Have those lessons been useful to the other aspects of your life? Or do you see that as a total waste of your time? Dr. Dario Altieri: Not at all. Not at all. I have been an incredible component and I think I was trying to be humorous and to take myself seriously, but not too seriously. But in fact, maintaining that level of interaction, particularly with aspects of the work that I've never encountered, for instance, regulatory aspects of an early-stage clinical trial with the Food and Drug Administration, that has been part of the life journey and I only have very good things to say about my experience. You know, it's been interesting, Lidia, being part of the experience of being a telephone operator and a mailman. I had this sense, and I could be completely wrong, but I had this sense that people out there want to see us taking small risks. They want to see testing new drugs, they want to see new targets being somehow examined, developed, if at all possible. I had the sense that there was support, you know, for the idea, and this was an entirely publicly funded program. I funded both the preclinical and now the clinical trial of Gamitrinib out of the American taxpayer's commitment and in many different study sections, in dealing with the FDA, in dealing with other regulatory consultants, I always get the sense people who wanted to help, then had perhaps the mindset, okay, we don't know whether this is going to work or not but let's give it a try. Let's give it a shot. It was wonderful, that was an absolutely awe-inspiring experience. Dr. Lidia Schapira: I'm glad they did and I'm glad you shared your experience with all of us. Is there something else that you'd like our listeners or your readers to know about you or this story? Dr. Dario Altieri: I just would like to say that I would do it again, 12 years, I would do every step of the way but I think I'm done. If I were to start over, I'll do it again, but I don't think I'm ready to do it again with another target. Dr. Lidia Schapira: And with that, I want to thank you and I want to thank our listeners. Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO's podcasts. You can find all of the shows at the podcast.asco.org. 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 or service organization activity or therapy should not be construed as an ASCO endorsement.

In this episode, Laurie is flying solo and talks with the amazing Nelli Kim, Founder & CEO at RĒDEN, which makes radically comfortable shoes with a purpose, and Founding Board Member of RAISEfashion, a network of fashion industry leaders, providing pro bono consulting to Black-owned brands and individuals, with a mission to advance the equity of Black talent. She is also Co-founder of Embers International, which works to fight the injustice of human trafficking.Nelli talks about how she got into fashion and her climb up the ladder to high-end fashion apparel and shoes, and then the moment when she felt called to intersect her experience with raising money for organizations doing good in the world. Nelli shares honestly about her cancer diagnosis, the healing process, and how her experience made her goal to make comfortable shoes even more meaningful. We talk about the power of mentorship and making ourselves available to others, and about why heromakers can be found in unlikely places.Heromakers can be found on IG @heromakersmovement and on FB @heromakersmovement. You can also visit our website at: https://www.heromakersmovement.com. Nelli's Links:LinkedIn: https://www.linkedin.com/in/nelli-kim-370754a6Personal Instagram: @nellibellekRĒDEN: https://www.shopreden.comEmbers International: http://www.embersinternational.orgRAISEfashion: https://raisefashionnow.orgIn this episode, we reference Megs Yunn on Celebrating Birthdays, Building Joy, and Speaking Dignity to Children  (S1E23).You can watch this and other episodes of the podcast on YouTube here: https://www.youtube.com/channel/UCuVDFP8jEcv5bdhr8VLzXjA. Like us and follow us today!And share this episode with your friends. Want to support this work we do?? We are on PATREON and would love if you would join our growing community! Check it out here: https://www.patreon.com/heromakersmovement. 

Are you hesitant to lean into hard, necessary, conversations? In this episode, Kim Somers Egelsee and Eden Sustin are joined by David Richman. Along with being an entrepreneur, athlete, speaker, and philanthropist, David traveled 5,000 miles to lean into 15 hard conversations about people's experiences with cancer for his inspiring new book "Cycle of Lives". Therefore, he shares with us the inspiration and journey diving into those stories as well as the importance of not judging someone's views on life before you hear their whole story, the importance of leaning into hard conversations, and how to deeply and emotionally connect with all different types of people. More about David & get his book: https://david-richman.com/

Funny and sad story of what happens when we are not present and get tunnel vision w the grind of life.

Anil Patil is a Colorectal Cancer survivor. His symptoms started with blood in the stool. When he consulted the doctor for the same, it was initially diagnosed as a Fissure. The doctor gave him medicines for 15 days, but as there was no change in the condition, he came to Nashik, where another doctor did a colonoscopy, and a tumor was detected. He got married in just three years, and his kid was just two months old. He underwent Colorectal Cancer surgery and was provided with a colostomy bag. Everything was new for him, but he got adjusted soon. Ostomy Association of India also provided him with all the necessities and helped him change quickly. Anil Says a Colostomy bag is not a big deal. There might be some changes in your physical appearance, but it will not change who you are. After all, You are who you are.

Boyd Dunleavy is a two times Blood Cancer Survivor. On one day in 2011 July, he suddenly started feeling unwell, and on further tests, he was diagnosed with Acute Myeloid Leukemia. He underwent three cycles of chemotherapy as a part of the treatment. He also required a stem cell donor. He had a lot of support from his community financially and spiritually. Finally, he recovered. In February 2012, he started feeling unwell again, and cancer relapsed. He cried for three days. He is a true believer in God. One fine day he started feeling very sick, and he was almost on the verge of his death. On that day, he saw a miracle. He saw Jesus. Believe it or not, everything seemed apparent when the doctors did Biopsy the next day. One of his friends said he would like to run a marathon to raise cancer funds for Boyd. It was a life turning moment for him. He got motivated, and he started running. He had run for 30 km, Disney marathon and still running happily along with his family and friends on the side.

Tune in to hear the stories and perspective of two of McKinley's staff members who were affected by breast cancer. Connect with the conversation, interesting insight and the importance of prevention. For resources and support check out the list of resources in our description. Want to connect with us? Leave us a voice message through our Anchor Homepage (anchor.fm/mckinley-health-center) or email us at mhcmarketing@illinois.edu. Also be sure to follow us on our social media pages for more health and wellness content. Instagram: @mckinleyhealthcenter (https://www.instagram.com/mckinleyhealthcenter/) YouTube: @McKinleyHealthCenter (https://www.youtube.com/user/MHCMcTV) ----- RESOURCES: National Breast Cancer Foundation: Information, Awareness & Donations - National Breast Cancer Foundation Mammogram 101 eBook: Mammogram 101 eBook - National Breast Cancer Foundation Susan G. Komen: Breast Cancer Foundation | Susan G. Komen® American Cancer Society: American Cancer Society | Information and Resources about for Cancer: Breast, Colon, Lung, Prostate, Skin --- Send in a voice message: https://anchor.fm/mckinley-health-center/message

Stef's been chanting mantras in a trailer park healing shack by the sea, should we call for help? Hold the phone—It's the cancer card episode! You get a cancer card, and YOU get a cancer card, and YOU get one! Listeners share the ways they've cashed in on their experience with the big C to enhance myriad situations; we've got cops, coffees, and upgrades galore. Also, Big Thief and Big Keef are back and STILL mixed up. Maybe they'll do a benefit show together? Then, a surprise letter is coming…from inside the house! Someone near and dear reminds fellow blood cancer people to get their covid antibody tests. Finally, HATS… we mean RATS has incredible news for glioblastomas. Magnets: how do they work?! To learn more about the oscillating magnet beer hat that's curing glioblastoma, check out this articleGet your own ACTUAL cancer card from Oh You're So Tough on Etsy RATS theme song by Jessica BoudreauxTheme music by VyvyvyrJoin our Facebook group! Support us with Buy Me A Coffee or by rating, reviewing, and subscribing on Apple Podcasts (this seriously helps!) 

Welcome to Help, I Think I Got This, the podcast where we create a platform for people to share their stories with mental health on their own terms. This week I am joined by motivational speaker Matt Ode. Matt is a stage 3 testicular cancer survivor who went through so many struggles with his cancer but pushed through them all and came out with such a positive outlook on life. Matt has amazing tips and advice in this episode for you guys on how you can better your mental and physical health. I think you guys will find a ton of value in this episode and I hope you enjoy!Matt's instagram: https://www.instagram.com/matty_ode/My instagram: https://www.instagram.com/helpithinkigotthis/My tik tok: https://www.tiktok.com/@helpithinkigotthis?lang=en

Mother Bobbie Jean Smoots is a great woman of faith and love out of St.Louis, MO that has overcome the hardest of trials and the best of miracles with great stride, meekness, and positivity. To know her is to know God because she walks in a true reflection of Him and bears much fruit. Today she is going to tell us how she overcame Cancer and other hardships, as well as how she can stare Covid-19 in the eyes with no fear, while still managing to keep a heavenly joy no matter comes her way. Her great faith is rare and it has drawn many to pull on her strength throughout the city of St.Louis, and today it's her hope that the power of her testimony will help you in these hard times as well.  

Meet Christie.Christie was diagnosed with leukemia at 27 years old, completely flipping her life upside down. Her career and plans were put on hold as she battled cancer, beating it once only for it to return again and again.Now with a clean bill of health, Christie shares what life looks like while you're recovering from cancer - in the middle of a pandemic - and some ideas on what her future holds.LOOKING FOR MORE?Show Notes: https://www.howdidyouendupthere.com/podcast-episodes/sales-professional-who-beat-cancer-three-timesInstagram: @howdidyouenduptherepodContact: howdidyouenduptherepod@gmail.com

Today's guest is Dr. Deanna Thompson, professor of religion at Hamline University in St. Paul, MN and author of "Glimpsing Resurrection: Cancer, Trauma, and Ministry." Dr. Thompson was diagnosed with metastatic breast cancer in 2008 and is currently in remission. WTS student Katlyn DeVries sat down with Dr. Thompson to discuss how faith is experienced through the trauma of serious illness, and what connections she sees between cancer stories and the Christian story.