For several years, a woman believed that the changes in her skin were harmless eczema. When she was finally diagnosed, she had to face a bleak truth.
Sitting in her friend’s jeep parked at the edge of the road among the steep mountains below Taos, Jessica Baskin Taylor gripped the phone in her hand, trying to understand what the doctor was saying 3000 miles away. The coincidence seemed unreal: the blue skies and amazing landscapes of New Mexico contrasted with the chilling news of a study that she was completely unprepared for from a barely known doctor.
“I was in a panic,” says Taylor of the conversation she had with the doctor. A few days earlier, Taylor reported to the emergency department outside her home in Philadelphia for what doctors mistakenly believed to be merely acute folliculitis on her thigh.
Taylor, who was 41 at the time, says she burst into tears upon hearing the shocking diagnosis and immediately thought of her husband. Six weeks earlier, he had been diagnosed with a rare but treatable cancer and was due to undergo the first course of intensive chemotherapy upon her return. She also thought of the two children who were not yet seven years old. Then she wondered if she would be able to continue working as an educator in an elementary school.
She asked the doctor if she needed to be back on the next flight home. He assured her that the next few days of vacation would not matter, but recommended that she go to a specialist as soon as she returned.
After consulting with her husband, Taylor decided to finish her journey, but she wondered how long it would be before she could go on her next vacation. – Then I called my sister and asked her to tell our parents.
Four years earlier, Taylor had noticed a cluster of small, hard lumps the size of a pencil eraser under the skin around the elbow.
What is this? – she remembers that her sister asked her. Taylor made light of it, joking that she had elephantiasis on her elbow.
Whatever it was, came and went. “It was a bit itchy, but imperceptible and generally fine,” recalls Taylor.
A few months before asking Sister Taylor, who was pregnant for the first time, she noticed dry patches of reddened skin on her legs. “I thought it was for the winter,” she says. She smeared it with a thick layer of petroleum jelly to ease the inflammation of the skin. After a while, the stains disappeared.
In early 2007, she went to a dermatologist when lumps appeared on her trunk. The dermatologist said she showed no concern and focused on the three lumps that had recently appeared on the inside of Taylor’s arm. They’re spider bites, she said, advising Taylor to use hydrocortisone.
The lumps on the torso are gone, but the ones on the arm remain. She went to another dermatologist who said it could be folliculitis. She was prescribed a new cream, and in a few weeks the lumps disappeared, as did the patches of dry skin. But a few months later, it reappeared.
Taylor remembers that something didn’t seem quite right, so she started doing a web search for the causes of lumps and red spots. She concluded that the most likely cause was eczema, a common skin condition that manifests itself as irritated patches. Another option was contact eczema, caused by an allergic reaction to substances that come into contact with the skin, such as soap and washing powder. Taylor was relieved that neither of these conditions was particularly serious.
– I was working, I had small children, and it was not bothersome – he says. After a while, Taylor forgot about the matter at all.
One day that changed. After spending a hot day with her family at a folk festival, Taylor was about to step into the shower when she noticed a large, soft bump the size of a 5-cent coin protruding on the inside of her right thigh.
“He was really gross,” he recalls. When, after a few days, the tumor grew and started to hurt, she went to see an internist. He examined it and told Taylor it was probably a boil, which is staphylococcal inflammation, or a hair follicle infection. He prescribed oral antibiotics and an ointment.
Neither one nor the other helped. She called an internist who advised her to see a dermatologist.
Taylor failed to sign up for a quick visit and became concerned that she was supposed to fly to New Mexico to visit a friend. “I knew I couldn’t get on the plane with this thing on my leg without knowing what was wrong with me,” says Taylor, who concluded that it would be best to go to the local emergency department.
It was an extremely stressful summer. In late July, Taylor’s husband, then 39, was diagnosed with hairy cell leukemia, a rare, slow-growing and treatable type of cancer that causes abnormalities in white blood cells. He was scheduled to start chemotherapy at the hospital as soon as Taylor returned from her trip.
The emergency room doctors were baffled. One thought the tumor was folliculitis, others weren’t sure. The next day, another dermatologist – the third she had seen in four years – removed the growth that had grown to the size of a quarter and sent it for a biopsy.
I’m sure it’s nothing, she remembers telling her, but we’re sending everything to the lab.
The results were supposed to be in a few days. Taylor says the dermatologist allowed her to leave and made a call when the pathologist found something.
Just before leaving, Taylor tossed a joke to her husband: It turns out that my tumor is also cancer.
It was like that. A biopsy showed that the painful tumor on Taylor’s thigh was a primary cutaneous anaplastic large cell lymphoma, a slowly growing tumor that, like hairy cell leukemia, affects white blood cells. Associated with or preceded by lymphoid lumps – lumps that first appeared on Taylor’s elbow four years earlier and affect one in a million people. And the dry, red patches were mycosis fungoides, a symptom of lymphoma that can be mistaken for eczema.
Further research revealed that Taylor suffers from primary cutaneous CD30 + lymphoproliferative syndrome. This slowly developing malignant disease is a cluster of several conditions, says Ellen Kim, associate professor of dermatology at the University of Pennsylvania, who specializes in treating Taylor’s lymphoma. There is no cure for this disease, nor is its cause known. Treatment is based on suppressing skin lesions and removing existing ones, sometimes with radiation or drugs, including steroids. Unlike aggressive forms of lymphoma, Kim describes Taylor’s prognosis as fairly good. Research has shown that over 90 percent. patients live for at least 10 years.
How often does this happen? Taylor asked the hematologist from Penn Sunita Nasta, who was treating her and her husband simultaneously. Nasta told the spouses that they were the first husband and wife she was treating at the same time. – It’s great that we had the same doctor because we couldn’t undergo chemotherapy and radiation at the same time. And she could tell who of us needed therapy first.
Kim says that because Taylor’s disease is very rare, many dermatologists have never had a case like this. The four-year delay in diagnosis, she added, did not hurt, because this type of cancer develops very slowly. “It’s not unusual,” says Kim. – Sometimes the diagnosis takes six or even 10 years, because these forms of lymphoma resemble common, benign skin lesions that often come and go.
However, Kim added that patients who suffer from a rash that does not go away can always ask their doctor for a biopsy. Taylor regrets not having done so sooner, especially since she was skeptical about the diagnosis of a spider bite.
Shortly after returning from New Mexico, Taylor underwent 12 radiation sessions which removed the mark on her thigh that remained after the removal of the tumor. He didn’t reappear, and neither did the lumps on his elbow and torso. Taylor sees her doctor regularly and requires no additional treatments. And her husband’s leukemia since chemotherapy in 2009 is in remission.
But Taylor says the simultaneous news that she and her husband both suffer from cancer was one of the most difficult moments of her life. To this day, she remembers with all sharpness that phone call and the uncertainty as to whether I will have to undergo chemotherapy and die, and what to say to the little children who already knew their dad was sick. – But I had to deal with it. There was no way out – he says.
Sandra G. Boodman