Late on a Wednesday evening in March 2023, Dave Wyatt sat down at his computer and began typing a message to members of his cancer team, starting with a one-word subject line: “help.”

“I am asking/begging someone to help me,” the Florida man wrote, via the Mayo Clinic digital messaging portal. “Every day is a struggle in every aspect of my being.”

His plea grew more urgent as he typed: “While you do not know me personally, I hope you understand the gravity and pain of my existence and are moved/motivated to help me. I honestly don’t know how much more I can take.” 

Cancer surgeries had claimed most of Wyatt’s lower teeth and parts of his tongue, leaving him unable to speak clearly. His mouth was riddled with sores. His jaw would lock open involuntarily, and his tongue could spasm. Feeling humiliated by these convulsions, Wyatt often wore masks. Swallowing even pureed foods, now the majority of his diet, became an agonizing struggle. Eventually, he transitioned to eating through a feeding tube.

A nurse responded through the portal the next morning to let him know the neurology department would get back to him soon. Securing a referral to a specialist, however, took another week. It was another delay, another physician added to the list, another appointment in a medical journey that had become a nightmare.

Even in a state like Florida, which boasts acclaimed oncology centers, is a magnet for highly trained specialists and has the resources to devote considerable money to fight the disease, a cancer diagnosis can be a ride through hell.

That’s particularly true in complex cases where effective care spans multiple disciplines and no single practitioner supervises the entire course of treatment. Specialized care teams exist in theory, meant to pool expertise. But in practice, patients like Wyatt sometimes find themselves thrust into the role of de facto coordinators, navigating a fragmented system without medical training, shuttling between specialists while grappling with increasingly terrifying symptoms.

This is the story of one man’s excruciating ordeal, drawn from extensive interviews with Wyatt and his wife about their passage through the twists and turns of Florida’s healthcare labyrinth, consultation with experts in the field of oncology, and rare access to clinical notes from attending physicians.

With the exception of one neurologist, the Wyatts’ doctors and hospitals named in the article declined to comment despite multiple opportunities to respond to the couple’s detailed account.

Teenagers in love

When Dave Wyatt first met his future wife, Karin, they were both just 17 years old. He was working as a bag boy at their local Publix supermarket in Satellite Beach, a coastal enclave where teenagers would practically live at the beach to surf, sail, and swim.

“I’m going to marry him,” Karin Wyatt recalled telling a friend at the time. The couple would be together for over 50 years. They had children, and Dave Wyatt built a career at Publix, where he managed one of the chain’s first stores outside of Florida. Eventually, they came back to Melbourne, just miles from where they grew up, to care for ailing parents. Their passion was the water, and for years they had planned a retirement on their sailboat, which they named KaDance, a word-play combination of their first names. When their parents died in 2019, they prepared to set sail.

In 2020, all of that changed. Just as the coronavirus pandemic hit the United States, Dave Wyatt, then 65, was diagnosed with oral cancer. Initially, the prognosis seemed manageable. Dave Wyatt, a onetime smoker who had quit 25 years earlier, underwent a series of surgeries and radiation treatment, and in late 2021, he entered remission.

The good news didn’t last. Over the next two years, he would develop new, baffling symptoms, including debilitating muscle spasms and involuntary facial movements. He saw a cascade of specialists, yet none could definitely explain his deterioration. The couple felt that no one took charge of his overall care.

In the years after his diagnosis, Dave Wyatt’s care would involve at least 26 doctors across 10 specialties, along with other nurses, physician assistants, dietitians, and therapists. In five years, he had over 150 doctor appointments, telemedicine calls, and home visits. His medical journey crisscrossed Florida, from his Melbourne home to cancer centers in Tampa and Jacksonville.

This array of practitioners across different systems complicated coordination, but even within single institutions, the Wyatts found themselves constantly chasing medical records, researching conditions independently, and seeking second opinions when specialists offered conflicting views or treatments failed.

“I can’t help but feel frustrated,” Karin Wyatt would later write in her diary. “I want to scream, shake somebody, and beg for someone to help him.”

Lots of players, no one taking charge

It started with a tumor the size of a sesame seed. 

During a routine dental cleaning in early 2020, Dave Wyatt’s dentist noticed an unusual white spot on his lower gum and advised a biopsy. The pathology report came back positive for squamous cell carcinoma. Dave Wyatt’s cancer, however, was considered to be at a relatively early stage. When detected early, the five-year survival rate for this type of cancer is high, around 99%, and doctors generally recommend acting quickly to surgically remove tumors before they metastasize.

The Wyatts sought an evaluation at Tampa’s Moffitt Cancer Center, which is top-rated for cancer care in Florida by U.S. News & World Report. Doctors confirmed the diagnosis and recommended surgery. Surgeons operated on Dave Wyatt, removing portions of his jawbone that the cancer appeared to have spread to, some of his teeth in the affected area, and replacing tissue on the floor of his mouth with a skin graft. They also performed a neck dissection to check for lymph node cancer, finding none.

Moffitt’s post-surgical notes stated: “COMPLICATIONS: none.” 

Dr. Krupal Patel, Dave Wyatt’s surgeon, told him he could return home just a few days after the surgery. He would need only to have a home health nurse check in on him and remove his surgical neck drain.

But the team at Moffitt scheduled in-person appointments sooner than anticipated, including one with Dr. Patel, which made the Wyatts fear that something went wrong with the surgery. They made the three-hour trip back to Tampa just to discover that Moffitt had made a scheduling error. They apologized to the Wyatts for the mix-up.

The Wyatts also recalled that during one of the follow-up visits at Moffitt, when Dave Wyatt complained of shoulder pain and numbness, Dr. Patel mentioned that he might have severed a nerve during the surgery. 

Still, the follow-ups left them confused, and the Wyatts felt that something in the surgery did not go as planned. Unclear exchanges around major medical events like this set the tone for the next four years of Dave Wyatt’s care.

Two months later, Dave Wyatt’s dentist noticed new white spots in his mouth. It was, again, squamous cell carcinoma. The Wyatts consulted with Moffitt about the developments, and Dr. Patel said this time, Dave Wyatt would need an even more invasive procedure. They had been told early on that there was a possibility he might need further surgeries, but between scheduling issues, confusion about the first surgery’s success, and other communication issues, the couple lost faith in Moffitt. They sought a second opinion at Mayo Clinic in Jacksonville.

For the Wyatts, it was easy to trust the doctors at Mayo Clinic, which U.S. News has ranked the second-best cancer hospital in Florida. “They have the best service in the world at Mayo Clinic,” Dave Wyatt said. 

At Mayo, a team of doctors that included a radiation oncologist, a medical oncologist, and a head and neck surgeon came to a similar conclusion as Moffitt – Wyatt would need another surgery to remove more of his jawbone and the floor of his mouth. He would also need the remainder of his teeth pulled, and would likely need radiation therapy. 

Dave Wyatt’s cancer team at Mayo Clinic was ambitious, and the Wyatts recall being reassured that these procedures were definitive. Karin Wyatt was skeptical. In one instance, she remembered a surgeon’s confidence: “That oral cancer surgeon pointed his finger right in his face and said, ‘you will never have cancer again,’” she recalled him saying in multiple interviews with reporters.

Karin Wyatt was, however, skeptical of radiation therapy. She had friends who had undergone radiation treatment for breast cancer and experienced intense scarring and swelling. To ease her doubts, she recalled, Dave Wyatt posed a hypothetical to the radiation oncologist, Dr. Stephen Ko: If it were his father, would he recommend radiation? The Wyatts remember Dr. Ko saying that in that scenario, he would recommend the treatment. Convinced by that answer, Dave Wyatt decided to proceed with radiation.

In September of 2020, he underwent the recommended surgeries at Mayo Clinic. A month later, he began an intensive six-week course of radiation therapy, and in 2021, he was declared cancer-free.

The specialization paradox

The specialization driving cancer breakthroughs has lengthened life expectancies and increased overall survival rates. Modern oncology aims to conquer the disease through a diverse range of treatments, including chemotherapy, radiation, and surgery. But the same specialization is precisely what makes navigating modern cancer care so complex, inherently requiring more coordination as individual practitioners apply their expertise. 

Additionally, cancer patients often have underlying conditions that fall outside the expertise of oncology teams, further adding to the coordination complexity.

“Cancer is a complex disease. It requires multiple different specialists to treat it,” said Dr. Dana Verhoeven, an assistant professor at the University of Nebraska Medical Center College of Public Health who studies models of cancer care delivery and team dynamics in medicine. Not only must oncology teams coordinate on the cancer treatment itself, but they often need to account for comorbidities, like heart disease or diabetes. “Typically, most individuals who have cancer are older,” she said. “As you get older, you’re also more likely to have another chronic condition.”

These underlying conditions shift the standard guidelines for treating cancer and require additional communication between cancer doctors and a patient’s external physicians, like primary care doctors. Comorbidities, in turn, increase the complexity of individual cases and may even affect a patient’s potential for adverse reactions to treatments. To operate effectively, cancer teams must communicate about these complications with each other, as well as external specialists like dermatologists or cardiologists. They also need to ensure that patients understand the risks that come with treatments.

But the realities of operating within healthcare institutions often obstruct this critical teamwork. Specialists work under intense time pressures, while billing models favor high numbers of patient appointments in a given day over time spent coordinating with other doctors.

This systemic failure to integrate care can not only inconvenience patients and caregivers by elevating them to the role of care coordinators, but it can also result in diagnostic delays, conflicting treatments, and dangerous gaps in oversight. Often, patients and caregivers, who are rarely medical professionals, find themselves responsible for figuring out how this all fits together.

“There’s a lot of siloing within specialities, within areas, and even within organizations,” said Marissa Shuffler, an associate professor of Industrial-Organizational Psychology at Clemson University who researches how disjointed cancer care can contribute to high costs, poor outcomes, and medical errors.

“A lot of the ownership is really put on patients and caregivers,” she said. “It’s an unfair thing to do because you’re asking someone who doesn’t have the knowledge and expertise to know what they don’t know.”

John Cleveland, Moffitt’s executive vice president, told Florida lawmakers last February that Floridians with cancer “used to be a state where you’d flee to the Northeast, especially Boston or New York,” to get first-rate care. That’s no longer true, he said.

Still, in U.S. News’ most recent ranking of cancer treatment centers, three of the top five were in New York or Boston. Moffitt was tops in Florida, listed at No. 23, followed by Mayo at 24.

The last two Florida governors, Rick Scott and especially Ron DeSantis, whose wife Casey is a cancer survivor, have advocated pouring millions into cancer research, aimed in part at “breaking down longstanding silos” that thwart research and treatment.

The cost of being cured

In remission, the Wyatts hoped life-threatening medical issues were behind them, even though they knew the procedures would change their lives.

Dave Wyatt, now completely toothless, would be on a liquid diet the rest of his life. He mourned his smile, and missed eating the same food as everyone else. Though he repeatedly inquired about dental implants, doctors suggested that the prosthetics could cause inflammation and make it harder to monitor his recovery, increasing the risk of a missed cancer recurrence.

For Karin Wyatt, this reality crystallized one evening around Thanksgiving, soon after Dave Wyatt completed his treatment. “I can remember standing in the kitchen cooking dinner, crying,” she recalled. “You know, you think about food. That’s socializing…families get together. You eat, you go out. We’re not going to get to do that because he’ll never be able to get teeth because of the bone loss.”

Later, that realization would seem comparatively trivial to Karin Wyatt as her husband began to develop new complications that would upend any pre-existing expectation of recovery.

In March 2021, soon after his surgery and radiation treatment at Mayo Clinic, Dave Wyatt developed white plaque on his tongue. He was also more tired than usual, was having difficulty swallowing, and his speech was impaired. He returned to Mayo Clinic to speak to his radiation oncologist, Dr. Ko, who tried to reassure him that the plaque was a symptom of lichen planus, a preexisting chronic inflammatory condition with which Wyatt had been struggling for decades.

Dr. Ko had included in clinical notes that radiation could exacerbate lichen planus, but the Wyatts didn’t recall that ever being part of the conversation. But now, it appeared his condition was flaring up. Dr. Ko referred Wyatt to a dermatologist, who, for the next year, helped him battle painful sores in his mouth with periodic success.

The more frightening complications began in 2022. First, during the couple’s visit with their adult son in Tennessee, Dave Wyatt’s neck stiffened up, making it hard for him to move. He fell to the ground, and his mouth formed a rigid “O” shape that he couldn’t seem to break from. Then, weeks later, during a sailing trip to Key Largo, Florida, Dave Wyatt suddenly found his jaw locked open while his tongue began spasming unrelentingly. At sea and terrified, the Wyatts made their way home and scheduled the first available appointment with his oncology team at Mayo Clinic.

A week later, Wyatt was back at Mayo to get an MRI, hoping the hospital’s neurologists might provide some explanation for the movements.

The Wyatts had been generally satisfied with the care at Mayo to this point and expected the same reception Dave Wyatt had received during his surgeries and radiation. But when they met with two neurologists, the neurologists told the couple to seek marriage counseling.

In the neurologists’ clinical notes from that visit, the doctors described the strain of Dave Wyatt’s cancer diagnosis on the couple’s marriage, as well as their lack of socialization, but wrote little in reference to the involuntary movements that were the primary reason for the visit. 

“He and his wife admit that they are likely both depressed,” the doctors wrote. “Mrs. Wyatt states that her current way of living is ‘unmanageable’ and she is ‘fed up.’ Yesterday, on the drive to Jacksonville, they shared that they discussed divorce because of her unhappiness.” 

One of the neurologists, Dr. Amanda Porter, declined to comment on the Wyatts’ specific situation, but said that she believes all of her patients should also see a therapist. “I make a referral for nearly 100% of my patients,” she said. Porter admitted that patients are often shocked by the suggestion, especially when it is their first time meeting her. “Having someone they trust, a third-party that can help them process these changes as they go through them, is always helpful,” she said.

But the Wyatts were insulted and felt the neurologists weren’t listening to them. “Like, what the hell are you talking about?” said Dave Wyatt, recalling his thoughts from the meeting. “We’re telling our story!” The meeting yielded no answers about his condition.

As Dave Wyatt’s facial movements became more frequent and the couple’s frustrations with their doctors increased, Karin Wyatt began looking for her own answers. She noticed similarities between her husband’s condition and the symptoms of tardive dyskinesia, a movement disorder caused by long-term use of certain antipsychotic medications. That didn’t make sense to her, as Dave Wyatt wasn’t on any of those drugs, but in their next post-surgical follow-up, the Wyatts brought the theory to Dr. Janus, the Mayo Clinic head and neck surgeon who had performed Wyatt’s procedures on his jaw, mouth, and teeth. She also researched other similar conditions, movement disorders that, similar to tardive dyskinesia, are characterized by involuntary head, neck, and oral movements.

Dave Wyatt’s symptoms were outside of Dr. Janus’s specialty, and he referred Wyatt to a different neurologist at Mayo Clinic. Dave Wyatt readied himself for a new MRI with a new doctor. It would be the 18th physician involved in his cancer or post-cancer care to date.

In their clinical notes, the new neurologists wrote that, while Dave Wyatt’s symptoms were consistent with a disorder called “cervical dystonia,” as Karin Wyatt believed, they were also characteristic of edentulous dyskinesia, another rare movement disorder that commonly affects people who have lost most or all of their teeth.

The Wyatts didn’t recall edentulous dyskinesia ever being mentioned to them, despite Dave Wyatt’s history of surgeries that left him without any teeth.

As a result, the Wyatts missed out on a crucial hypothesis that might have provided some answers to what was going on.

“Nobody could figure out what it was,” Karin Wyatt said. “[They] just stood there like they never saw this before.”

Movement disorders are notoriously difficult to treat, said Dr. Mark Hallett, the retired chief of the Medical Neurology Branch at the National Institutes of Health. “There are some therapies that can be useful in some people, but therapies in general are not as good as we would like to have them.” 

One treatment option, Dr. Hallett explained, is Botox injections, which can sometimes slow or even halt involuntary movements and reduce pain. 

Between September 2022 and March 2023, Wyatt received three rounds of injections in his jaw and neck. But the treatments, which used doses similar to those that might be applied for cosmetic purposes, did little to help Wyatt’s condition.

At a friend’s recommendation, the Wyatts sought help elsewhere, from a neurologist at the University of Miami, Dr. Henry Paul Moore, a movement disorder specialist. “We thought we found the answer,” Karin Wyatt said.

The couple described Dr. Moore as confident about Dave Wyatt’s situation.

While Dr. Moore attempted to treat him with more intensive Botox, he also proposed a theory that his condition may have been caused by what the Wyatts recall him describing as scatter radiation, or radiation that spreads out in different directions when a beam interacts with body tissue. According to the Wyatts, Dr. Moore thought that scatter radiation may have contributed to a radiation overdose that caused damage to Wyatt’s basal ganglia, a part of the brain that helps regulate voluntary movements.

Reporters shared their findings about Dave Wyatt’s movement disorder, as well as Dr. Moore’s hypothesis with Dr. Hallett and three other medical professionals, including two chief radiation oncologists and a surgeon. Each doctor said they had never heard of a movement disorder being caused by scatter radiation.

Radiation therapy often has overlooked consequences that leave patients like Wyatt with dry mouth, weight loss, and extreme fatigue — all of which he suffered from. Scatter radiation, on the other hand, does not generally result in adverse side effects and is relatively harmless for patients, experts say. Instead, scatter radiation is associated with long-term, frequent exposure to low doses. This most commonly affects practitioners such as healthcare professionals who administer radiation, since it can build up in their bodies over time. 

When asked whether radiation could result in a movement disorder, Dr. Hallett, the retired movement disorder neurologist, said he wouldn’t rule it out, but that in his five decades as a neurologist, he had never seen it.

Though Dr. Moore’s continued Botox treatment provided some relief to Wyatt, it was temporary. At a certain point, Dr. Moore conceded the injections were no longer helping. Still, the Wyatts were confident in Dr. Moore, who they felt had heard their struggles and gave them hope when so many other physicians had not.

The caregiver’s burden

For years, Karin Wyatt handled a demanding schedule of her husband’s appointments across various hospitals and clinics, tracking down medical records, trying to make sense of differing opinions from specialists, and spending hours researching conditions online. As Dave Wyatt’s condition worsened, with attempted treatments providing little to no relief, she remained the primary coordinator and caregiver of the entire operation, all while grappling with how her life had fundamentally changed.

“We needed someone to help us this whole time,” Karin Wyatt said. “We’re navigating this on our own.”

Her diaries offer a visceral account of the toll placed on caregivers as they watch loved ones decline.

“Neither of us are remotely the same people we used to be,” she wrote in April 2023.

“Every day I wake up and wonder if he’s alive,” she wrote in another entry, after the Wyatts turned to the Center for Pain Management, a chronic pain clinic with multiple locations in Florida.

One weekend in March 2024, after an abruptly changed medication regimen, Dave Wyatt developed intense headaches and severe nausea. Karin Wyatt suspected medication withdrawal. But her attempts to reach the prescribing physician hit a wall. The doctor was abroad and unreachable, while messages left with the office weren’t passed on to the covering physician. It took hours of frantic effort, finally involving a spontaneous drive to multiple pain clinics on a Friday night, to secure the necessary medication.

After that scare, the Wyatts turned to St. Francis Hospice, an end-of-life center that they hoped would help with pain management. The hospice doctors changed Dave Wyatt’s medications, which provided immediate pain relief. 

The complexity and sprawl of her husband’s medical care was central to their lost faith in the system. “In our case, you get three ‘different’ opinions,” she wrote. “And then you realize it’s all a shit show.”

All the while, Karin Wyatt’s mental health suffered, as she grappled with what it meant for her life to be centered on keeping her husband alive. “I am doubtful I will ever find the right book, therapist, friend, something or someone to help me,” she wrote. “No one wants to be in my story. But that’s the thing. It’s not my story. I am a secondary character.”

When patients with complex medical needs lack professional care coordination, the responsibility shifts onto an often-invisible workforce. An estimated 53 million family caregivers provide support across the United States, performing tasks ranging from basic assistance to complex medical management. The American Association of Retired Persons values the labor at roughly $600 billion annually – a massive, hidden subsidy underwriting American healthcare.

One potential solution to the caregiver burden lies in a system of care that was developed at Harlem Hospital in New York in the 1990s, but has yet to be adapted by most cancer centers in the United States. 

Cancer care navigation, a process by which specially trained individuals help patients maneuver the complex healthcare system, includes nurse navigators, who coordinate the clinical aspects of a patient’s care like ensuring that treatment plans are communicated to every specialist on a patient’s team, as well as patient navigators who can tackle financial and organizational challenges like understanding a complicated insurance policy or finding cheaper means of transportation for financially challenged patients. 

“I really do think that the idea of these navigators is such a critical one,” said Marissa Shuffler, the team psychology researcher at Clemson University. “You need someone who can understand the patient’s needs and then clearly convey that to the rest of the medical team.” 

However, cancer centers have been slow to adopt these systems, although both Mayo and Moffitt have them.

Penny Bauman, a nurse navigator who worked at Mayo Clinic between 2019 and 2020, right before Dave Wyatt became a patient there, commented that Mayo’s head and neck navigation program was relatively new and did not operate efficiently. Bauman was expected to fill in for a triage nurse and a melanoma clinic nurse on their days off. On those days, the navigator role came second. This flawed structure ultimately led to her leaving Mayo Clinic just six months after she was hired. 

“I think we were on our way to make it a good program, but I needed to focus on the navigator role instead of working as a clinic nurse,” Bauman said. 

The end, without answers

One day in early December 2024, Dave Wyatt projectile vomited green liquid across his bathroom floorboards, toilet, and wall. He tried to hide his violent bout of sickness to avoid worrying his already strained wife, but when a hospice nurse visited later that night, he had a high fever, and his blood pressure was even lower than usual.

A few days later, when the nurse came to check on him again, Dave Wyatt asked about testing for kidney and liver failure. She responded that hospice exists to make him comfortable, unsure what the Wyatts would do with information from further medical workups. The couple was well past the point of finding answers, let alone a cure.

As Dave Wyatt’s condition worsened, the couple tried their best to maintain a sense of normalcy.

“We do have fun,” Karin Wyatt said on a video call in February, glancing at her husband for confirmation.

“We’re still here,” he replied, his voice muffled by the gaiter mask he used to hide a mouth that he hadn’t been able to control in years.

When Dave Wyatt felt up to it, they would visit the beach or take out their boat. “The dolphins come up and sail with us all the way from one bridge to the other sometimes,” Karin Wyatt reflected. “There are good times.”

As patient and caregiver, the couple grappled with the unknown timeline in their own ways.

“We’ve been practicing dying,” Karin Wyatt said. “They don’t teach you that.”

“I don’t have the will to die,” Dave Wyatt said. “I just don’t have it. I can’t do that. It’s just not in me.” 

Still, he hoped that the end of his life would bring his wife peace after caring for a dying man for nearly five years.

“If and when he does pass, I have no regrets,” Karin Wyatt wrote in her diary in January 2025. “I’m a person, yes. I love him, too. I am the only person to be there for him. I’m carrying too much grief while he is still alive. Loss, loss – so much loss.”

Dave Wyatt had sought help within the very institutions that declared his initial treatment a success, only to encounter specialists seemingly unable, or occasionally unwilling, to address complex post-treatment realities.

“Nobody knows. No institution has the magic word,” Karin Wyatt wrote in her diary. “It’s hit or miss. Who lives, who is crippled, who suffers from the treatment!!”

At the end, Dave Wyatt still did not know what was killing him. He would die at home on March 14, 2025, at the age of 69, more than two years after his doctors had declared him cancer-free. The reasons for many of his uncommon symptoms remained unknown to the Wyatts at the time of his death. To their knowledge, his cancer had not returned. 

Carolyn Gevinski is an independent journalist and Reporter Fellow at Columbia Journalism Investigations, a postgraduate cohort of investigative reporters from Columbia Journalism School. Her work has been featured in El País, GLAMOUR UK, Al Jazeera English, and Out Magazine. 

Alex Klavens is a graduate student at Columbia Journalism School. He is also a data journalist at The New York Times.