Douglas Flora, MD, an oncologist with St. Elizabeth Healthcare, in Edgewood, Ky., considers himself a deep empath. It’s one reason he became an oncologist.
But when he was diagnosed with kidney cancer in 2017, he was shocked at the places his brain took him. His mind fast-forwarded through treatment options, statistical probabilities, and anguish over his wife and children.
“It’s a very surreal experience,” Dr. Flora said. “In 20 seconds, you go from diagnostics to, ‘What videos will I have to film for my babies?’ “
He could be having a wonderful evening surrounded by friends, music, and beer. Then he would go to the restroom and the realization of what was lurking inside his would body hit him like a brick.
“It’s like the scene in the Harry Potter movies where the Dementors fly over,” he explained. “Everything feels dark. There’s no hope. Everything you thought was good is gone.”
Oncologists counsel patients through life-threatening diagnoses and frightening decisions every day, so one might think they’d be ready to confront their own diagnosis, treatment, and mortality better than anyone. But that’s not always the case.
Does their expertise equip them to navigate their diagnosis and treatment better than their patients? How does the emotional toll of their personal cancer journey change the way they interact with their patients?
Navigating the diagnosis and treatment
In January 2017, Karen Hendershott, MD, a breast surgical oncologist, felt a lump in her armpit while taking a shower. The blunt force of her fate came into view in an instant: It was almost certainly a locally advanced breast cancer that had spread to her lymph nodes and would require surgery, radiotherapy, and chemotherapy.
She said a few unprintable words and headed to work at St. Mary’s Hospital, in Tucson, Ariz., where her assumptions were confirmed.
Taylor Riall, MD, PhD, also suspected cancer.
Last December, Dr. Riall, a general surgeon and surgical oncologist at the University of Arizona Cancer Center, in Tucson, developed a persistent cough. An x-ray revealed a mass in her lung. Initially, she was misdiagnosed with a fungal infection and was given medication that made her skin peel off.
Doctors advised Dr. Riall to monitor her condition for another 6 months. But her knowledge of oncology made her think cancer, so she insisted on more tests. In June 2021, a biopsy confirmed she had lung cancer.
Having oncology expertise helped Dr. Riall and Dr. Hendershott recognize the signs of cancer and push for a diagnosis. But there are also downsides to being hyper-informed, Dr. Hendershott, said.
“I think sometimes knowing everything at once is harder vs. giving yourself time to wrap your mind around this and do it in baby steps,” she explained. “There weren’t any baby steps here.”
Still, oncology practitioners who are diagnosed with cancer are navigating a familiar landscape and are often buoyed by a support network of expert colleagues. That makes a huge difference psychologically, explained Shenitha Edwards, a pharmacy technician at Cancer Specialists of North Florida, in Jacksonville, who was diagnosed with breast cancer in July.
“I felt stronger and a little more ready to fight because I had resources, whereas my patients sometimes do not,” Ms. Edwards said. “I was connected with a lot of people who could help me make informed decisions, so I didn’t have to walk so much in fear.”
It can also prepare practitioners to make bold treatment choices. In Dr. Riall’s case, surgeons were reluctant to excise her tumor because they would have to remove the entire upper lobe of her lung, and she is a marathoner and triathlete. Still, because of her surgical oncology experience, Dr. Riall didn’t flinch at the prospect of a major operation.
“I was, like, ‘Look, just take it out.’ I’m less afraid to have cancer than I am to not know and let it grow,” said Dr. Riall, whose Peloton name is WhoNeeds2Lungs.
Similarly, Dr. Hendershott’s experience gave her the assurance to pursue a more intense strategy. “Because I had a really candid understanding of the risks and what the odds looked like, it helped me be more comfortable with a more aggressive approach,” she said. “There wasn’t a doubt in my mind, particularly [having] a 10-year-old child, that I wanted to do everything I could, and even do a couple of things that were still in clinical trials.”
Almost paradoxically, Mark Lewis’ oncology training gave him the courage to risk watching and waiting after finding benign growths in his parathyroid and malignant tumors in his pancreas. Dr. Lewis monitored the tumors amassing in his pancreas for 8 years. When some grew so large they threatened to metastasize to his liver, he underwent the Whipple procedure to remove the head of the pancreas, part of the small intestine, and the gallbladder.
“It was a bit of a gamble, but one that paid off and allowed me to get my career off the ground and have another child,” said Dr. Lewis, a gastrointestinal oncologist at Intermountain Healthcare, in Salt Lake City. Treating patients for nearly a decade also showed him how fortunate he was to have a slow-growing, operable cancer. That gratitude, he said, gave him mental strength to endure the ordeal.
Whether taking a more aggressive or minimalist approach to their own care, each practitioner’s decision was deeply personal and deeply informed by their oncology expertise.
Although research on this question is scarce, studies show that differences in end-of-life care may occur. According to a 2016 study published in JAMA, physicians choose significantly less intensive end-stage care in three of five categories — undergoing surgery, being admitted to the intensive care unit (ICU), and dying in the hospital — than the general U.S. population. The reason, the researchers posited, is because doctors know these eleventh-hour interventions are typically brutal and futile.
But these differences were fairly small, and a 2019 study published in JAMA Open Network found the opposite: Physicians with cancer were more likely to die in an ICU and receive chemotherapy in the last 6 months of life, suggesting a more aggressive approach to end-of-life care.
When it comes to their own long-term or curative cancer care, oncologists generally don’t seem to approach treatment differently than their patients. In a 2015 study, researchers compared two groups of people with early breast cancer — 46 physicians and 230 well-educated, nonmedically qualified patients — and found no differences in the choices the groups made about whether to undergo mastectomy, chemotherapy, radiotherapy, or breast reconstruction.
Still, no amount of oncology expertise can fully prepare a person for the emotional crucible of cancer.
“A very surreal experience”
Although the fear can become less intense and more manageable over time, it may never truly go away.
At first, despair dragged Flora into an abyss for 6 hours a night, then overcame him 10 times a day, then gripped him briefly at random moments. Four years later and cancer-free, the dread still returns.
Hendershott cried every time she got into her car and contemplated her prognosis. Now 47, she has about a 60% chance of being alive in 15 years, and the fear still hits her.
“I think it’s hard to understand the moments of sheer terror that you have at 2 AM when you’re confronting your own mortality,” she said. “The implications that has not just for you but more importantly for the people that you love and want to protect. That just kind of washes over you in waves that you don’t have much control over.”
Cancer, Riall felt, had smashed her life, but she figured out a way to help herself cope. Severe blood loss, chest tubes, and tests and needles ad nauseum left Riall feeling excruciatingly exhausted after her surgery and delayed her return to work. At the same time, she was passed over for a promotion. Frustrated and dejected, she took comfort in the memory of doing Kintsugi with her surgery residents. The Japanese art form involves shattering pottery with a hammer, fitting the fragments back together, and painting the cracks gold.
“My instinct as a surgeon is to pick up those pieces and put them back together so nobody sees it’s broken,” she reflected. But as a patient, she learned that an important part of recovery is to allow yourself to sit in a broken state and feel angry, miserable, and betrayed by your body. And then examine your shattered priorities and consider how you want to reassemble them.
For Barbara Buttin, MD, a gynecologic oncologist at Cancer Treatment Centers of America, in Chicago, Illinois, it wasn’t cancer that almost took her life. Rather, a near-death experience and life-threatening diagnosis made her a better, more empathetic cancer doctor — a refrain echoed by many oncologist-patients. Confronting her own mortality crystallized what matters in life. She uses that understanding to make sure she understands what matters to her patients ― what they care about most, what their greatest fear is, what is going to keep them up at night.
“We’re part of the same club”
Ultimately, when oncology practitioners become patients, it balances the in-control and vulnerable, the rational and emotional. And their patients respond positively.
In fall 2020, oncology nurse Jenn Adams, RN, turned 40 and underwent her first mammogram. Unexpectedly, it revealed invasive stage I cancer that would require a double mastectomy, chemotherapy, and a year of immunotherapy. A week after her diagnosis, she was scheduled to start a new job at Cancer Clinic, in Bryan, Tex. So, she asked her manager if she could become a patient and an employee.
Ms. Adams worked 5 days a week, but every Thursday at 2 PM, she sat next to her patients while her coworkers became her nurses. Her chemo port was implanted, she lost her hair, and she felt terrible along with her patients. “It just created this incredible bond,” said the mother of three.
Having cancer, Dr. Flora said, “was completely different than I had imagined. When I thought I was walking with [my patients] in the depths of their caves, I wasn’t even visiting their caves.” But, he added, it has also “let me connect with [patients] on a deeper level because we’re part of the same club. You can see their body language change when I share that. They almost relax, like, ‘Oh, this guy gets it. He does understand how terrified I am.’ And I do.”
When Dr. Flora’s patients are scanned, he gives them their results immediately, because he knows what it’s like to wait on tenterhooks. He tells his patients to text him anytime they’re afraid or depressed, which he admits isn’t great for his own mental health but believes is worth it.
Likewise, Dr. Hendershott can hold out her shoulder-length locks to reassure a crying patient that hair does grow back after chemo. She can describe her experience with hormone-blocking pills to allay the fears of a pharmaceutical skeptic.
This role equalizer fosters so much empathy that doctors sometimes find themselves being helped by their patients. When one of Dr. Flora’s patients heard he had cancer, she sent him an email that began. “A wise doctor once told me....” and repeated the advice he’d given her years before.
Dr. Lewis has a special bond with his patients because people who have pancreatic neuroendocrine tumors seek him out for treatment. “I’m getting to take care of people who, on some level, are like my kindred spirits,” he said. “So, I get to see their coping mechanisms and how they do.”
Ms. Edwards told some of her patients about her breast cancer diagnosis, and now they give each other high-fives and share words of encouragement. “I made it a big thing of mine to associate my patients as my family,” she said. “If you’ve learned to embrace love and love people, there’s nothing you wouldn’t do for people. I’ve chosen that to be my practice when I’m dealing with all of my patients.”
Ms. Adams is on a similar mission. She joined a group of moms with cancer so she can receive guidance and then become a guide for others. “I feel like that’s what I want to be at my cancer practice,” she said, “so [my patients] have someone to say, ‘I’m gonna walk alongside you because I’ve been there.’ “
That transformation has made all the heartbreaking moments worth it, Ms. Adams said. “I love the oncology nurse that I get to be now because of my diagnosis. I don’t love the diagnosis. But I love the way it’s changed what I do.”
A version of this article first appeared on Medscape.com.