She’s worn both a hospital gown (for Li-Fraumeni syndrome) and a white coat. Now she wants to change how doctors perceive their patients

BOSTON — Shekinah Elmore was not yet a physician when she gave her own second opinion. After a year of cancer treatment — including lung surgery, chemotherapy, and a double mastectomy — she was hell-bent on starting medical school. Her doctors tried to dissuade her, recommending that she take more time to recover from her third stint with cancer. But two weeks after finishing the therapies that left her bald and unable to walk without getting winded, Elmore took an oath to do no harm.

“I’m a very stubborn person,” she said a few weeks ago, laughing at the gall of her younger self.

Eight years after starting medical school, Elmore wears her dark hair in long braids with golden ends. But against the brick walls of a quiet coffee shop, her earrings — orange hoops the size of peach slices — stand out the most.

As a student, Elmore also paired her outfits with unapologetically loud earrings. Her classmates took her shaved head to be another style choice, and not the effect of toxic chemotherapy.

Elmore was perceived as “among the healthy,” and recalls that wrong assumption with both fondness and frustration. It was nice blending in at school, she said, surrounded by new people who didn’t constantly ask, “How do you feel?”

But, at the same time, Elmore wanted her peers to recognize that not every person who looks well is well. Her classmates began to draw imaginary lines between themselves, the “healthy,” and their future patients, the “sick.” Elmore herself was proof that those categories aren’t so clear cut. Later, she’d realize how much their use hurts patients.

“It starts so early that you talk about patients as this other thing,” she said.

“Why does there have to be this stark separation? Why do I have to be either healthy, well, young or I have to be sick, patient, disabled? Why can’t I just be a person who is a lot of different things?”

Elmore is a lot of things: She is both a cancer doctor and a “cancer person” — she’s not keen on the word “survivor.” Now 36 and a fourth-year resident in the Harvard Radiation Oncology Program, Elmore has Li-Fraumeni syndrome, a genetic disorder that puts her at high risk for a range of cancers.

Having worn both a hospital gown and white coat, she moves through her work with a kind of double vision, seeing through the eyes of a patient and of a provider. The two views are hard to reconcile, and leave her wondering what can be done to bridge the gaps that exist between doctors and their patients.

At first, she kept her illness to herself, perhaps worrying that her classmates and professors would see her like some doctors begin to see their patients — as a constellation of symptoms instead of as unique individuals who happen to be going through a difficult, scary illness. Eventually, though, she found the strength to speak up.

“Our patients are people first,” Elmore said, her earrings swaying as she shrugged.

She is a person first, she wanted her colleagues to know. A doctor, too, who happens to have a cancer-causing mutation.

It began when she was 7 years old, with a hole in her heart. She felt fine and, as a kid, couldn’t understand why, after seeing a picture, the doctors decided to split open her chest. That was the first time she felt the confusion and uncertainty patients face. The second time was when she developed rhabdomyosarcoma, a cancer of the muscles, initially as a child and again as a teenager.

Not long after, she found the lump in her breast, the first sign of her simultaneous breast and lung cancers. Elmore underwent genetic testing. She learned that she had Li-Fraumeni syndrome during a break from class in her first year of medical school.

“I remember it was September. Everything else has disappeared, or never registered,” she wrote in an essay published earlier this year in the New England Journal of Medicine.

Li-Fraumeni is a relatively rare condition caused by a mutation in p53, a gene dubbed “the guardian of the genome.” Normally, this gene codes for a protein that prevents the body’s cells from overgrowing.

But if one copy is mutated, the protein can’t do its job, meaning cells can proliferate and cancers can form. As such, Li-Fraumeni puts people, starting at a young age, at increased risk for a variety of cancer types, including of the bone, soft tissues, breast, brain, and kidney.

The diagnosis, while genetically definite, is clinically uncertain. The mutation poses a high risk, but doesn’t dictate a fate.

“There are people who can not have another cancer for a decade or two, and there are some who can have another cancer tomorrow,” said Dr. Anthony D’Amico, Elmore’s longtime mentor and fellow radiation oncologist at Harvard Medical School.

But the uncertainty isn’t only about if, when, and where another cancer might arise, it’s also about what patients can do to protect themselves.

“Should I touch anything? What should I be doing? Should I just stay in a hermetically sealed bubble?” Elmore asked. “‘Is that how I prevent getting cancer?”

As a radiation oncologist, Elmore has more answers than most. Medical knowledge has, at times, been her antidote to uncertainty. Some questions (will I get another cancer?) cannot be answered, but many concrete ones (should I see my doctor about this bump?) can.

Elmore recently joined an online support group for people with Li-Fraumeni. One woman posted about her new job that requires her to put her lunchbox through an X-ray machine every day. “Will that give me cancer?” she asked the group. After reading a flurry of factually incorrect responses, Elmore stepped in with her professional opinion (no, it will not).

She said she’s had to limit herself to providing medical advice only when something is “grossly inaccurate.” Otherwise, she’d be on the forum all day.

But she understands the fear, and said she can’t imagine navigating her condition without a medical background. “The world is just a basket full of uncertain choices,” she said.

Elmore found that, as a cancer doctor, she could help her patients navigate some of those uncertain choices, starting with their treatment plan.

“As I worked with patients, I had a sense of how I could make the care better for cancer patients,” she said. “I don’t have that same sense for patients who have a heart issue — I felt like I was helping people in a unique way.”

Elmore compared deciding on cancer care to shopping for nuclear submarines. Even if she did weeks of research, she said she still wouldn’t know which to buy without consulting an expert. That’s what she tries to do for her patients — she gets to know them as people, understands their fears and hopes, and then offers her recommendation, built on her clinical knowledge as well as her own medical experiences.

D’Amico first met Elmore when she was a medical student; he was her adviser, and she turned to him for both professional and personal guidance. When she told him that she wanted to become an oncologist, too, he advised her to focus on her ability to connect with her patients. Medicine could always be learned, he said, but humanism — once lost — is hard to recover.

Elmore said that treating patients with cancer just “felt right.” She also knew that she wanted to pay forward her luck in being able to access good care — she now does global health work, seeking to expand access to cancer care around the world.

Her mind was already set on becoming an oncologist. But when other students ask D’Amico his advice about whether to pursue a specialty that hits close to home, he cautions them that proximity between career and difficult experience can also be a drain:

“I make sure that they have addressed in their own heart the impact it will have on them when they see someone suffering with the same diagnosis — but maybe, when they’re no longer curable.”

Elmore had little choice but to tell classmate Camila Cribb Fabersunne about her medical history. Fabersunne, who strikes a similar balance of forthrightness and warmth as Elmore, noticed Elmore’s midline scar early on during their time at Harvard Medical School. Fabersunne also has a midline scar from a heart operation as a child, so she marched up to Elmore and bluntly asked, “Do you have medical problems?”

At first, they bonded over having had open heart surgery as children. Later, Fabersunne learned the full extent of Elmore’s medical journey.

“We ended up talking a lot about why we went into medicine, why we were there, and how it felt different [for us] to hear [doctors] talk about patients,” said Elmore.

They were allies, Fabersunne said, in a system that routinely overlooks the possibility that providers — or students on track to become providers — could be patients, too. In lectures on abnormal physiology, the students are often used as the reference point for “normal,” Fabersunne explained. “This is how it works in your kidneys,” a lecturer might say, assuming that all students have normal physiology.

“There’s this assumption ubiquitously throughout medicine that we are the healthy, able-bodied individuals and we don’t have medical concerns,” she said. “But that was not my reality.”

After a long history of heart defects as a child, a bone tumor that led to several fractures as a teenager, and both celiac and Crohn’s disease as a young adult, Fabersunne identifies as a person with disabilities.

She faced a new set of challenges once she left the classroom and entered the hospital. On her surgical rotation, she had a visceral reaction to being back in an operating room. Under the bright lights, she was flooded with sensory memories of being a frightened, sick child in the OR and in the intensive care unit. “It was quite triggering,” she said. “I had to push through.”

As a pediatrics resident at the University of California, San Francisco, she faced another obstacle — disclosure. “I was taught as a medical student that we should never disclose our personal health information to our patients,” she said. That is a selfish act, she was told, and not part of the job. But Fabersunne isn’t always sure; she sometimes wants to share her own experiences to better connect with her patients and their parents, especially when she treats children with heart defects or orthopedic surgeries like the ones she had as a kid.

Elmore has publicly disclosed pieces of her medical history. One year into medical school, she wrote about having had cancer — and working to preserve empathy — in the Journal of the American Medical Association; this year she wrote about her diagnosis with Li-Fraumeni. But these essays were published in journals read mostly by a medical audience. Her patients, she said, rarely look her up — since she is still a trainee, her attending physician is listed as the primary provider.

Like Elmore, Fabersunne firmly believes that her personal experiences make her a stronger clinician, and a better advocate for her patients:

“I have a well of empathy that others don’t have. In general, we chose careers where we have extraneous or superfluous empathy. Observing suffering and strife is draining for all of us, but there are places where each of us excel.”

For Fabersunne, that place is in pediatrics, working with sick kids, much like she once was. For Elmore, it’s in oncology, taking care of patients with cancers like her own.

Two weeks before the New England Journal of Medicine essay was published in May, Elmore saw a patient who also had Li-Fraumeni syndrome. Elmore’s supervisor encouraged her to present the young woman’s story at their case conference, an opportunity for clinicians to review with colleagues how they provided care for a patient.

Elmore was hesitant, but having not shared her condition with her boss, she didn’t want to explain her reluctance. Plus, she knew she’d be good at teaching the case, and wanted to help educate her colleagues. She went ahead, prepared her presentation, and emailed her fellow residents to let them know that they’d be discussing Li-Fraumeni in the upcoming meeting.

A few responded with some less-than-friendly comments. “People were just being doctors, which is a little obtuse, but generally not mean-spirited,” Elmore said. But one resident wrote that he was tired of learning about “rare and unimportant” diseases.

Elmore was stunned. She would have felt insulted even if she didn’t have Li-Fraumeni, but that made the comment even more hurtful. “I actually have the disease!” she laughed while retelling the story this month, still in disbelief.

She said that she’s all for gallows humor, but “I don’t want us to be the kind of doctors that would talk in a way that the patients would feel hurt or harmed.”

Two weeks later, Elmore’s essay was published and, although she was no longer in the same hospital as her colleague who had sent the email, she smiled knowing he would see the piece titled “P53 and Me.”

Elmore likes old-school practices: She keeps a ruler in her white coat pocket to get exact measurements of lesions, and uses a penlight instead of an iPhone flashlight to peer into patients’ mouths. And for a long time she liked maintaining her invisibility as a cancer survivor; it allowed her to hear how other doctors speak about their patients, unaware that one was in their midst.

She has specific grievances: doctors who stand above their patients while delivering bad news, or who use jargon when explaining a condition or a treatment plan, or who fail to notice when the patient is lost or scared.

“It does bother me a lot more than the average doctor when there’s a physician who is painfully bad at delivering information, and I can see it hurting patients,” she said. She goes out of her way to protect patients from those kinds of conversations, to step in and clarify or offer empathy. But she can’t always help.

“That’s when I feel the most that I’ve felt coming close to burnout, when I see a system of care or particular individuals where [their] communication is really hurting patients,” she said. “And I don’t have that much agency because I’m just one person and I’m not in charge.”

Elmore thinks more clinicians — especially those who often have to deliver bad news like oncologists — need to take the time to break the ice, to get to know their patients as people, and to sit down and face them. Then, they need to outline the goals of a visit. These small steps, she said, return control to the patients, and remove some fear and uncertainty from the clinical encounters.

The New England Journal article gave Elmore a platform to speak to other physicians about the uncertainty that comes along with a genetic diagnosis. In it she wrote:

“Will knowledge about our personal genomes deliver us, or be our undoing? My knowledge has both empowered and broken me — I don’t know which it’s done more. Flying between fatalism and denial, I eventually decided that I had to live, normally.”

Elmore has done far more than live normally, say her admirers. “She’s really declared herself as somebody who will be a future leader,” said D’Amico. “She’s an emblem of what it means to be a provider, in every sense of the word.”

Like her friend Fabersunne, Elmore feels she landed in the exact right place, where she can offer the best care. “Every day I feel that I made the right choice,” she said.

“I help people in a way that I wouldn’t be able to do if I hadn’t had all my experiences,” she said. As a doctor, she added, “you are so lucky to be invited to help people in a really tangible, personal way. You have knowledge that is helpful. You have human skills that are helpful. It’s so cool.”