Medical Mysteries | A tiny spot on his nose radically changed his life

The pea-size spot near the tip of his nose seemed so innocuous Ben Murray thought it might have been numb for a while and he simply hadn’t noticed.

In March 2020, Murray, a videographer and editor for the Military Times, had other things on his mind. The pandemic was in its frightening initial throes, and Murray’s wife, Rebecca, was pregnant with their first child.

For the next few months Murray, then 42, periodically touched the spot, which seemed unchanged. He decided, he said, it was “something weird that would go away on its own.” But by August the numbness had spread, the area had reddened, and it once bled for no apparent reason.

The following month he saw a dermatologist, the first of six doctors he would consult over the next seven months.

In April 2021, more than a year after he first noticed the spot, Murray learned what it was. The discovery cleaved his life into distinct halves: before the diagnosis and after it.

He and his family have spent the past four years coping with a malady so unusual Murray likens it to “a meteor hitting a leprechaun.” Treatment has proved to be far more grueling and protracted than anyone expected.

“When you get something like this, you’re not just trying to get better,” observed Murray, who said his ordeal led him to discover a resilience he hadn’t known he possessed. “You’re doing it to be able to soldier through ... [and to] keep everyone around you as sane and as unburdened as they can be.”

The first dermatologist Murray consulted in September 2020, a month after his son was born, thought he had rosacea, a common and chronic inflammatory skin condition that causes redness on the nose and cheeks. The doctor prescribed a series of creams. None helped.

Murray decided he might have better luck with a primary care doctor. An online search yielded an internist not far from his Maryland home, whom he saw in December 2020.

The internist looked at his nose, said he didn’t know what was wrong and referred Murray to an ear, nose, and throat (ENT) physician.

After ordering blood tests, the ENT diagnosed a staph infection, a common bacterial disorder.

“He seemed pretty sure he had nailed it,” Murray recalled. But none of the prescribed creams reduced the redness or numbness.

The ENT then ordered a CT scan of Murray’s head, which revealed chronic sinusitis. One possible treatment was sinus surgery, which the doctor said might relieve pressure on a nerve that could be causing numbness.

But the surgeon cautioned Murray that he wasn’t convinced sinus surgery was the answer and recommended another opinion.

A second ENT prescribed another round of creams. They didn’t work, and in April 2021 he performed a biopsy.

Days later Murray learned that the biopsy revealed skin cancer, the most common malignancy, although the type was unclear.

There are three main types of skin cancer along with several others doctors do not commonly encounter. Basal cell carcinoma, a slow-growing cancer that accounts for 80% of cases, is diagnosed between 2 million and 4 million times a year in the United States. Squamous cell, diagnosed more than 1 million times annually, tends to be more aggressive. Melanoma, the most lethal of the three, accounts for about 100,000 cases annually. All are linked to sun exposure.

Surgery to remove the cancer, along with surrounding tissue that can harbor malignant cells, is a common treatment. It is typically most successful when cancer is detected early.

Determining the identity of Murray's cancer, which would guide treatment, fell to a Northern Virginia dermatopathologist, a pathologist who specializes in dermatology cases, and two specialists in dermatologic oncology.

One of the dermatologists told Murray the spot on his nose was either squamous cell cancer or a malignancy so uncommon “it hardly bore mentioning,” he remembers.

Days later Murray received stunning news. Pathologists had settled on the second, extremely rare option — an aggressive form of squamoid eccrine ductal carcinoma (SEDC), or cancer of the sweat glands, which shares some features of squamous cell carcinoma. Murray’s dermatologist said he was seeking a second opinion at Johns Hopkins.

Hopkins pathologists concurred with the diagnosis.

First described in 1997, SEDC is typically found on the head or neck and sometimes the limbs. It has been reported in a few hundred people worldwide, many of them men over 70. Because so few cases have been recorded, little is known about it.

“This is one of those diagnoses that if you don’t have it in the back of your mind” you’re probably not going to make it because it’s so rare, said surgical oncologist Michael Lowe, an associate professor at Emory University School of Medicine who specializes in complex skin cancer treatment.

Lowe, an expert for the American Society of Clinical Oncology, said that while he's seen hundreds of cases of cancer affecting the sweat glands, he's not sure he's ever encountered a patient with SEDC, which is characterized by atypical squamous cells along with distinctive ductal features.

Reeling from the unexpected diagnosis, Murray and his wife scrambled to decide how to proceed and consulted doctors in Northern Virginia, Baltimore, and Cleveland.

Treatment options quickly narrowed. A genetic study found that immunotherapy, which uses medications that harnesses the body’s immune system, was unlikely to be effective. Radiation alone would probably fail, doctors said. Mohs surgery, which involves removing the cancer layer by layer until none remains, offered no benefit.

The consensus recommendation was rhinectomy, an operation to remove part or all of Murray’s nose, followed by six weeks of radiation. That would be followed by a series of reconstructive surgeries estimated to take about 18 months using custom-made facial prostheses along with tissue harvested from Murray’s thigh and cartilage from his ribs. In a rare bit of good news, tests showed that the malignancy had not spread beyond his nose.

“My initial reaction was no friggin’ way,” Murray said in a 2021 interview, adding that he regarded nose removal surgery as “medieval.”

But he was also a new father who desperately wanted to see his son grow up and was acutely aware that a recurrence could kill him or require even more extensive facial surgery.

“It’s difficult to clear the skin of the nose without clearing the nose,” said Emory’s Lowe, which is why rhinectomy is the preferred treatment for some cancers. Although cosmetic considerations are undeniably important, he said, the paramount goal of treatment is to eradicate the cancer.

But, he acknowledged, “there are significant social and psychological impacts” particularly for younger patients. “You can have terrible colon cancer and get an ostomy bag and no one knows. But rhinectomy patients have to wear the effects of this cancer all the time. There’s no hiding it.”

As weeks passed, doctors at Johns Hopkins, where Murray had decided to undergo treatment, pressed him to make a decision — and soon.

“They said, ‘Look, it’s an aggressive cancer, and it’s getting worse by the day’ — they could actually see it growing, ” he said.

“I went through a lot of agony trying to save [my nose],” Murray recalled. In the end, he decided the drastic operation was his only choice.

Murray’s outpatient rhinectomy occurred on July 9, 2021.

In what he calls one of the worst moments of his life, Murray said that the first question he asked his wife in the recovery room was whether any of his nose remained. The answer was no; the cancer had infiltrated more deeply than his Hopkins ENT surgeon hoped. But in a critically important finding, the pathology report showed that the margins — healthy tissue surrounding the tumor — were free of detectable cancer cells.

Radiation, which turned out to be much tougher than Murray expected, began a month later. Treatments were administered five days a week for six weeks. The first month Murray lost more than 20 pounds.

Since then, the complex, exacting, and sometimes searingly painful reconstructive surgeries that were supposed to take a total of about 18 months have stretched to more than 3½ years and are still underway. Murray was initially told he might need about six operations; so far he has undergone 18. His doctors hope to complete the process this year.

One reason for the slow pace is that Murray is believed to have malignant hyperthermia, a rare genetic condition that causes a potentially fatal reaction to certain anesthesia drugs and requires special precautions. The problem was discovered after he underwent an emergency appendectomy at 17 and suffered a severe drug reaction that included a dangerously high fever.

Lowe said that the damage caused by radiation may have complicated reconstruction. In the summer of 2022, a year into the process, Hopkins surgeons discovered that the tissue and cartilage used to fashion a new nose had essentially collapsed and been resorbed by Murray’s body, requiring them to start over.

The unexpected setback, which Murray was told is rare, was crushing. “It was another stroke of bad luck,” he said.

One of the most difficult aspects of his new reality, Murray said, has been coping with feelings of profound isolation coupled with the radical change in his appearance — terrain explored by the late poet Lucy Grealy in her extraordinary 1994 memoir of childhood jaw cancer titled The Autobiography of a Face.

“It was way harder in the beginning,” Murray said. “It really kind of cripples you for a bit.” His wife, he said, has been an “absolute star” and his family an “unshakable presence.”

In an effort to update friends and family, Murray chronicled his ordeal in a dozen wry, unflinching, and sometimes graphic pieces posted on Medium.

“The mental aspect of this particular disfigurement is tough,” Murray said. “Very few people have it. I still look kind of funny and am not unaffected by it.”

His son, now 4, rarely mentions it, but Murray said other children “ask all the time, ‘What’s wrong with your face?’”

The singularity of his experience has been particularly difficult. Murray, who remains cancer-free, has never met another person diagnosed with SEDC. Before his first surgery he managed to speak with one man in his late 80s whose nose had been removed 30 years earlier. “He was not all that cogent,” Murray recalled.

Before his surgery Murray said he had hoped to prepare himself by working with a therapist who had treated rhinectomy patients. He was unable to find one.

He encountered a similar void trying to glean practical information about postoperative care. When he began bleeding unexpectedly after one operation and telephoned for help, a nurse told him to pinch his nose closed. When he told her he didn’t have one, she kept repeating the same instruction.

His experiences led him to start the Rhinectomy Support Network, a website and support group he hopes will benefit others.

Murray’s efforts, Lowe said, reflect a glaring need that remains largely unmet by the medical system.

Psychological support and home care “are all parts of a patient’s care,” the Atlanta surgeon said. It’s important for people who’ve undergone a rhinectomy “to know you are not alone, that there’s someone else out there who’s going through what you’ve gone through.”

“It takes a good amount of understanding and acceptance and wanting to put yourself out there,” Lowe said of Murray’s outreach. “I commend him immensely for that.”