Cancer Stories: The Art of Oncology American Society of Clinical Oncology (ASCO)

Listen to ASCO’s Journal of Clinical Oncology essay, “Knuckleheads” by Dr. Timothy Gilligan, Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. The essay is followed by an interview with Gilligan and host Dr. Lidia Schapira. Gilligan emphasizes the importance of partnering with his patients to understand what they are going through and their reason for rejecting recommended treatment.
 
TRANSCRIPT
Narrator: Knuckleheads by Tmothy D. Gilligan, MD, FASCO (10.1200/JCO.24.00160)
I was in tumor board when I first heard about him. One of my former colleagues referred to patients like this as knuckleheads, patients who were interfering with our plan to treat their cancer. He needed chemotherapy. He kept refusing. He was going to be referred to me so that I could talk some sense into him.
Preparing to go into the examination room, I realized I was getting ready to use my medical knowledge to try to make him consent to chemotherapy. After all, that is what he needed. If only he would listen to me. I paused and remembered what my mentors had taught me about forming effective relationships with patients and about the communication skills that could engender trust and a feeling of connection. I remembered one of them saying to me “Every time I open my mouth, I risk making things worse.” So I committed to listening and curiosity and humility and entered the room. He had a curable cancer. There was so much at stake.
“What have the other doctors been telling you about what’s going on?” I asked. He said he had been told that his cancer had come back and that he needed chemotherapy now. That additional surgery wasn’t an option.
“I heard that you had some concerns about chemotherapy,” I said.
“Yes, I want to delay it until the fall,” he said.
“Tell me about that,” I responded.
So I got to hear his story. He was a single father with several school-aged children. His wife had recently left him for another man and said a lot of hurtful things on the way out the door. She no longer wanted to be a mother and only saw the kids 1 or 2 days a month. His oldest child was in crisis and struggling in school. The patient was a construction worker who could only work during the warmer months and would be unemployed all winter. As a seasonal worker, he was not eligible for unemployment benefits. He was the sole breadwinner for his family. It was now summer. If he stopped working for 3 months to receive chemotherapy, he would not be able to support his family and had no way to make it up during the winter.
Not really the story of a knucklehead, of another man refusing to take care of himself. It all seemed so unfair to me that I wanted to cry, to have all this land on him at once—cancer, abandonment, a child in crisis, financial instability. He was overwhelmed. I let him know that I saw that, that I was moved by it.
We talked about his cancer and what we would expect to happen if it was treated and what would happen if it was not. He wondered if maybe we could wait 2 weeks and get another scan to see how quickly things were progressing. Medically this seemed safe, and I agreed to his plan. And with the help of the social worker on our team, we started marshalling resources that day to make it more feasible to get him through treatment, which he agreed to begin a few weeks later. He completed the course of chemotherapy, and he has most likely been cured.
He reminded me of another patient I had, an African American woman who had been referred to me by one of my only African American colleagues in my work setting. She had bladder cancer. When reviewing her chart, I noticed that she had been diagnosed 2 years earlier at a different hospital and refused treatment. The chart said that she needed to take care of her children and declined curative surgery for that reason. It seemed like an odd logic to me. Another knucklehead refusing to comply with our plan?
When I went into the roo

Listen to ASCO’s Journal of Clinical Oncology essay, “The Power of Story” by Dr. Erica Kaye, Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. The essay is followed by an interview with Kaye and host Dr. Lidia Schapira. Kaye shares her strategies to grow the field of narrative oncology.
 
TRANSCRIPT 
Narrator: The Power of Story, Erica C. Kaye, MD, MPH (10.1200/JCO.24.00013)
 
Everyone knew the baby was dying. The data were overwhelming, indisputable. Widely metastatic cancer, multiorgan system failure, a belly grotesquely distended by tumor and blood and gangrenous guts. “A corpse on a vent,” the nurses whispered outside the room.
Swaddled in the crib, a distorted body hidden neatly by crisp sheets, the baby's sweet face peeked out, cherubic and still. Her mother stared fixedly at her peaceful, doll-like face, and no amount of data presented by the medical team could persuade her that the child was nearing the end of life.
 
My job was to get the DNR. Swathed in a paper gown, gloves, and mask, I hovered in the doorway. The baby's mother sat in a chair beside the crib, hands over her eyes. I knelt on the floor at her feet. “I don't want to hear it,” she said, without looking at me. “I don't need to know the statistics. My baby will live.”
 
Oncology is a discipline driven by evidence. Quantitative data inform our treatment recommendations, prognostication, development of novel therapeutics, allocation of resources and funding, and scientific communication. We enumerate and measure variables and outcomes with the imperative goal of advancing science and strengthening our clinical care.
 
As a research scientist, I believe in the power of data. We cannot cure cancer, optimize quality of life, or improve end-of-life care without rigorous investigation.
Sometimes, though, I wonder if our profession's appreciation for the collection, analysis, and reporting of data causes us to overlook another profound and vital tool at our fingertips—the power of storytelling.
 
For me, a story is an account of the consequential parts of a person's life. It may spotlight a history of present illness or underscore a lifetime of illness. Sometimes, a story focuses on a singular decision; other times, it zooms out to explore the vast nuances of our complex lives—joy, suffering, love, loss, belonging, grief, and hope.
 
As a pediatric palliative oncologist, it's my role and privilege to bear witness and make space for the stories that honor people's lived experiences. Over the past 20 years, I've grown to believe that listening to and sharing stories is more than just the bedrock of humanism in medicine. It is also a powerful and effective tool for the effective practice of quality health care.
 
In my experience—for our patients who are suffering, their caregivers who face impossible decisions, and our colleagues who struggle to do no harm—knowing the data is rarely enough to navigate the terrain of modern medicine. We need stories to find our way, to reach people where they are, to help one another process devastating experiences, to choose a path forward and find the strength to put one foot in front of another.
 
“I hear you,” I said quietly, looking up at her. Her hands balled into fists, still covering her eyes.
 
“We won't talk about the numbers today.” Minutes passed, as we listened to the whir of the ventilator. Slowly, her fists unclenched, and her red, raw eyes met mine. “She's not a number,” I said softly. “She's a precious, cherished baby. She's her own person, not a percentage. She has a unique story, and I'm here to listen.”
 
Arguing for the power of stories may sound poetically naïve, even reckless to some. I've heard colleagues criticize narratives of illness experiences as irrelevant, outliers, or misleading. We are quick to discount stories that do not align rigorously with peer-reviewed publish

Listen to ASCO’s Journal of Clinical Oncology poem, “Etch a Sketch” by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. The poem is followed by an interview with Tong and host Dr. Lidia Schapira. Tong shares her thought process behind her fictional poem, where a mother and daughter receive bad news of a leukemia diagnoses.
TRANSCRIPT
Narrator: Etch a Sketch, by Wendy Tong, MD 
You are only seventeen when you first learn its meaning.
Just moments before, you sit in a white-walled room
with your mother by your side. You have been losing weight.
You have been feeling dizzy; you have been bedbound with colds.
You have been waking up with the taste of blood,
finding dried crimson on your pillow
and tiny red freckles smattering your skin. 
In the middle of the waiting your mind drifts back
to when you were younger, when the thing you liked best
to play with was an etch a sketch. You would maneuver the knobs
to draw lineographic pictures with an invisible stylus—a whole world of possibility pixelated into a gray two-dimensional screen.
If you made a mistake, no matter. The image would blur
with a few simple shakes; if no one saw it, did it ever really exist? 
When the doctor returns, you try to brace yourself but find
your defenses dissolving as he delivers the message. This is the moment you learn the meaning of tragedy. It is a fortune-telling, it is a sentence.
Your mother’s face pales. You simply stare at the hands in your lap—
hands that have just learned to love. Hands that have fumbled to make art; hands that could not help but hold onto hope. A whole world of possibility suddenly goes dark. If only this screen could be shaken, this gritty image erased.
As you watch your mother’s tears fall, you retreat to a safer place
inward, where you are free to sketch the image of the two of you
at the kitchen table just that morning, before things changed. 
In a single movement you pencil in the harsh slant
of your own angled cheekbone. In another, you etch worry lines
into your mother’s forehead for age to deepen.
This is not the future that she dreamed for you.
But there are things you cannot capture with two-dimensional strokes.
What of the way the sun had hit the glass saltshaker, or the slowing of light. The way refraction had scattered rainbow flecks across your mother’s cheeks like celestial confetti, the grace of an unseen angel.
The way the coffee was still warm against your lips. These are the things, you realize now, that will sustain you. You reach for her hand and she grasps back, tightly.
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, Professor of Medicine at Stanford University. Today we're joined by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. In this episode, we will be discussing her Art of Oncology poem "Etch-A-Sketch." 
At the time of this recording, our guest has no disclosures. 
Wendy, welcome to our podcast, and thank you for joining us.
Dr. Wendy Tong: Thanks so much for having me today.
Dr. Lidia Schapira: So let's start by talking a little bit about your writing, you are going through your medical training, tell us what writing does for you.
Dr. Wendy Tong: I first started getting into writing poetry, or writing in general, about halfway through medical school. I was always inspired to write after a specific patient encounter, sort of as a way to capture something human that I had noticed about them - a specific detail, mannerism, or attitude - something that I wanted to appreciate and remember. When I started, poetry was a good way to capture those little glimpses separate from writing more narrative essays where  you are able to get in more of the medical details, history, and t

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

Listen to ASCO’s Journal of Clinical Oncology essay, “Pet Therapy: How the Cat I Never Wanted Saved My Life” by Dr. Fumiko Chino, Radiation Oncologist at Memorial Sloan Kettering Cancer Center.. The essay is followed by an interview with Chino and host Dr. Lidia Schapira. Chino describes how she became an unlikely cat owner and how her "pet therapy" allowed her to move forward with life as a widow.
TRANSCRIPT
Narrator: Pet Therapy: How the Cat I Never Wanted Saved My Life, by Fumiko Chino 
My husband and I adopted our cat, Franklin, on a cold November day. It was one of the last days that Andrew felt well enough to leave the house to go anywhere other than to chemotherapy or a doctor’s appointment. Our news at these appointments had shifted toward the negative, with disease progression on scans, low blood counts, and fluid accumulating in places it shouldn’t be. After a year of aggressive treatment, his body was tiring out, and treatment options were becoming limited. Andrew had always wanted a cat, but I was resistant; I knew that I would be taking care of both of them and wasn’t sure that I was ready. At a certain point, though, if your dying husband wants a cat … you get a cat, right?
Franklin was a rescue—a scrappy orange boy with stripy legs and a spotted belly. He played with my husband’s oxygen tubing, batting the plastic back and forth. He adapted quickly and would sit in Andrew’s lap in a warm furry ball, signaling his comfort with loud, full-throated purrs. He would play fetch with my husband, who often wasn’t strong enough to leave the bed. There was a large bowl of wrapped candy in the living room, and Franklin would bring one to the bed. Andrew would throw it from his propped-up perch in the bed; if the angle was perfect, he could fling it from the bedroom, through the slight zig-zag of the hallway, and into the large open living room. Franklin would race off to chase the candy and then trot back to deposit it one more time in Andrew’s lap. They could do this for hours, it seemed, until one of them tired and then they would nap. They both napped a lot.
After Andrew died in March, it was hard to keep a schedule. Days and nights would drift into each other; it was the gray days of late winter before spring showed any promise of life. Franklin was my constant companion and followed me around the house, sitting in the living room to watch a movie or on a kitchen chair to stare at my meals, even into the bathroom. He slept at the foot of the bed and woke me up in the morning to feed him; he made it hard to sleep in all day and forced me to keep at least a semiregular schedule. I walked everywhere, trying to make simple tasks last all day; walking to get Franklin’s food from the pet store was a triumph of activity. We did, of course, take a lot of naps; sleep was an easy escape from my purposeless existence. He would fit his furry warmth in the crook of my knees or sprawl across my lap, mitigating the cold emptiness of a lonely day. He was a living presence when all I could see around me was death.
Grieving is no simple process but, with time, I was able to return to some semblance of a normal life. I found focus in singular steps: researching school options, studying for the MCAT, interviewing for and ultimately entering medical school. One step at time (one application, one class, one shelf) is how I progressed from grieving widow to oncologist. Franklin would sit on the kitchen table where I worked, putting his paw occasionally on my papers or resting his chin on the warm edge of my laptop. He kept me company through grueling hours of studying and welcomed me home from the hospital at all hours of the night, greeting me with a small noise halfway between a squeak and a meow. Franklin was a welcome constant as I reinvented myself as a physician, a comforting touchstone as I shed my former life as an artist and wife and gained new footing as a clinician and researcher.
I am now in m

Listen to ASCO’s Journal of Clinical Oncology essay, “Gosses and the Dalmatian Puppy” by Dr. Zvi Symon, Senior Consultant at the Sheba Medical Center in Israel. The essay is followed by an interview with Symon and host Dr. Lidia Schapira. Symon reflects on an ancient Jewish tradition while seeking to palliate a dying patient.
TRANSCRIPT
Narrator: Gosses and the Dalmatian Puppy, by Zvi Symon, MD 
A few months ago, I was paged to see a newly diagnosed patient in the hospital with a malignant trachea-esophageal fistula to consider palliative radiotherapy. Despite the 60-minute delay that had already accumulated in my clinic, I hurried past the folks in my waiting room as they scowled their dismay, and promised to return quickly.
 My new consult was a 70-year-old man who had lost 30 kg over the past few months. He was a heavy smoker with chronic bronchitis and a squamous cell carcinoma of the upper esophagus gnawing into the cartilage of the upper airway. The surgeons ruled out any hope for surgical remediation. The gastroenterologist attempted to insert a stent but could not get past the tumor’s stricture, so radiation therapy became the last option.
On the edge of the bed near the hospital room’s window sat Vladimir, a ghost of a man, coughing intermittently with a constant drool of saliva dripping into a stainless steel bowl that he held in his lap. I introduced myself, but he hardly acknowledged my presence, consumed by his own discomfort. I turned to his pleasant, gray-haired wife sitting in the blue armchair next to his bed. Before proceeding, I asked her what he knew about his condition, and she referred the question to him in Russian. Vladimir closed his eyes, sighed heavily and said softly: “I don’t feel well and… cannot eat.” His wife watched me as a sad smile played on her lips, and she struggled not to cry. I paused for a moment, remembering my full outpatient waiting room, but wanting to give his story justice. I turned to Vladimir’s wife.
“Tell me a bit about Vladimir, what did he do before he became ill?” I drew up a chair and sat closer and she sighed. “He worked as a builder. When the family emigrated to live here in Israel, his mother died soon after. He became deeply depressed and took to the bottle, spending most of the day sitting on the porch, drinking vodka, and chain smoking. A few years ago, I bought him a cute clumsy
Dalmatian puppy who adored him, romping around happily, licking his hands, and jumping all over him. He developed a special relationship with the dog, stopped drinking and took the dog each day for a long walk—well, perhaps the dog took him for a walk.” A smile flickered across her face briefly. “Unfortunately, the dog died a few months ago and he sank back into a depression, stopped eating, and has lost weight.” I was touched and saw the tears in her eyes flowing freely. “Do you have any family, perhaps children you would like to call to perhaps join us for the discussion?” I asked.
“We have two grown-up sons. One is currently ill with COVID and cannot come, and the other son also suffers from major depression: He has a hysterical paralysis and does not leave the house. I work as a cashier in the supermarket and am the only breadwinner for my sick son and husband.” I wondered if she had any idea of his prognosis and started a discussion regarding treatment options. Vladmir’s wife told me that she had heard that radiation therapy could help.
And while I would have loved to have played the role of knight in shining armor, saving him from the ravages of his cancer with radiotherapy, the reality is that the intervention is controversial in the treatment of trachea-esophageal fistula.
Should I raise the possibility of not doing the treatment? How would it be received? What could I offer in lieu? Was this an opportunity for a being and not doing discussion, one that talks about dignity and love and communication, about having the chance