Sitting in a friend’s Jeep pulled over by the side of a rugged mountain road outside Taos, Jessica Baskin Taylor gripped her cellphone as she struggled to comprehend what a doctor 1,700 miles away was saying. The juxtaposition seemed unreal: The cerulean sky and spectacular vistas of New Mexico contrasted with the chilling news of test results for which she was wholly unprepared, conveyed by a doctor she barely knew.
“I sort of freaked out,” Taylor said of the conversation that took place in the midst of a September 2009 vacation. A few days earlier, Taylor had sought treatment in an emergency room near her Philadelphia home for what doctors suspected, incorrectly, was just a badly infected hair follicle on her thigh.
Taylor, then 41, said she wept at the shocking diagnosis, thinking immediately of her husband. Six weeks earlier, he had been diagnosed with a rare but treatable cancer and was scheduled to undergo his first round of intensive chemotherapy after she returned. She thought of their children, both younger than 7. Then she wondered if she could continue working as an elementary school guidance counselor.
She asked the doctor whether she needed to catch the next flight home. He reassured her that a few more days of vacation wouldn’t matter but advised her to see a specialist as soon as she returned.
After conferring with her husband, Taylor decided to complete her trip, wondering how long it would be before she took another vacation. “Then I called my sister and told her to tell my parents.”
Four years earlier, Taylor had noticed a series of small, hard bumps the size of pencil erasers under the skin surrounding her elbow.
“What’s that?” she remembers her sister asking. Taylor brushed it off, joking that she had “elephantiasis of the elbow.”
Whatever it was, the problem came and went. “It was slightly itchy but not very noticeable, and mostly it didn’t bother me,” Taylor recalled.
A few months before her sister’s inquiry, Taylor, pregnant with her first child, had also developed very dry patches of reddened skin on her legs. “I figured, well, it’s winter,” she said, and slathered on petroleum jelly to soothe her inflamed skin. After a while, the patches disappeared.
In early 2007, she visited a dermatologist after bumps appeared on her torso. The dermatologist, she said, did not seem concerned and focused on three bumps that had recently appeared on Taylor’s inner arm. “They’re spider bites ,” she said, advising Taylor to use a topical cortisone cream.
The spots on her torso disappeared, but those on her arm remained. She sought an opinion from a second dermatologist, who told her the problem might be folliculitis, an inflammation of hair follicles. She was given a new cream to use; in a few weeks, the bumps disappeared, just as the dry patches had, only to reappear several months later.
Taylor remembers feeling that something wasn’t quite right and began searching online for causes of the bumps and red patches. The most likely cause, she decided, was eczema, a common skin condition that causes irritated, inflamed patches. Another possibility: contact dermatitis, which is caused by an allergic reaction to a substance such as soap or laundry detergent that touches the skin. Because neither is especially serious, Taylor felt relieved.
“I was working, I had little kids, and it wasn’t bothersome,” she said, so after a while, Taylor forgot about it.
That changed in August 2009. After spending a sweltering day with her family at a folk festival, Taylor was about to step into the shower when she noticed a large, squishy nickel-size lump protruding from her right inner thigh.
“It was really gross,” she recalled. When the lump got bigger and more painful a few days later, she saw her internist. He examined the area and told Taylor it was probably a boil, an infection caused by staphylococcus bacteria or an infected hair follicle. He prescribed an oral antibiotic and a topical cream.
Neither treatment helped. She called the internist, who advised her to see a dermatologist.
Taylor was unable to get an immediate appointment and was worried because she was scheduled to fly to New Mexico to visit a friend. “I knew I couldn’t get on a plane with this thing on my leg without knowing what was wrong,” said Taylor, who decided her best bet was to seek treatment in a local emergency room.
It had been an extremely stressful summer. In late July, Taylor’s husband, then 39, had been diagnosed with hairy cell leukemia, a rare, slow-growing and treatable cancer that results from abnormalities in white blood cells. He was scheduled to start inpatient chemotherapy soon after Taylor returned from her trip.
Doctors in the ER were baffled. One thought the lump was folliculitis; others weren’t so sure. The next day, another dermatologist — the third she had seen in four years — removed the growth, which had grown to the size of a quarter, and sent it for a biopsy.
“I’m sure it’s nothing,” she remembers him telling her, “but we send everything to the lab.”
The result would not be known for several days; Taylor said the dermatologist cleared her to travel and told her she would be called after a pathologist made a determination.
Just before she left, Taylor quipped to her husband, “Watch my lump thing turn out to be cancer, too.”
It was. The biopsy revealed that the painful lump on Taylor’s thigh was a primary cutaneous anaplastic large cell lymphoma, a slow-growing cancer that, like hairy cell leukemia, affects white blood cells. It is associated with, or preceded by, lymphotoid papulosis — the bumps that first appeared on Taylor’s elbow four years earlier and occur in about one in a million people. And those dry red patches were mycosis fungoides, a sign of lymphoma that can be mistaken for eczema.
Further testing revealed that Taylor had primary cutaneous CD 30+ lymphoproliferative disorder. This slow-growing malignancy is a constellation of several maladies, according to Ellen Kim, an associate professor of dermatology at the University of Pennsylvania who specializes in treating skin lymphomas and has treated Taylor since 2009. There is no cure for the disorder, nor is there a known cause; treatment involves suppressing new lesions and eradicating existing ones, sometimes through radiation or drug therapy, including steroids. Unlike with aggressive forms of lymphoma, Kim characterized the prognosis for Taylor as “quite good.” Studies have found that the 10-year survival rate exceeds 90 percent.
“What are the odds?” Taylor asked, echoing Penn hematologist Sunita Nasta, who treated her and her husband simultaneously. Nasta told the couple that they were the first husband and wife she had seen at the same time. “It was really good we had the same doctor because we couldn’t do chemo and radiation at the same time. She could prioritize who needed treatment first.”
Because Taylor’s disorder is so rare, Kim said, many dermatologists have never seen a case. The four-year delay in diagnosis, she added, was not harmful because the cancer grows so slowly. “That’s not uncommon,” Kim said. “Sometimes it takes six years or even 10 years for a diagnosis” because such forms of lymphoma mimic common, benign skin conditions and tend to disappear and reappear.
But, Kim added, patients who have a rash that is not improving can always ask their doctor to perform a biopsy. Taylor said she wishes she had done so sooner, particularly since she was skeptical of the spider bite diagnosis.
Soon after she returned from New Mexico, Taylor underwent 12 radiation treatments, which eradicated the spot on her thigh that remained after the lump was removed. It has not recurred, nor have the bumps that appeared on her elbow and torso. Taylor sees her doctors regularly and has not required additional treatment. And since his chemotherapy in 2009, her husband’s leukemia has been in remission.
But the news that both she and her husband had cancer at the same time was one of the most difficult moments, Taylor said, remembering with searing clarity “getting that call and not really knowing if I was going to need chemo or if I was going to die” or what to say to their young children, who had already been told their father was sick. “Ultimately I just had to deal with it. I didn’t have an option.”