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The Cheetah Club 

How a rare group of spotted patients and a small cadre of persistent doctors could help change the face of cancer research

Wednesday, Nov 1 2000
Julie Berruto didn't rip her skirt or tumble over a missed step the day she brought cheerleading practice at Concord's Clayton Valley High School to an abrupt halt. As the girls rehearsed their dance formations on the lawn, the sound of pop music pierced the quiet campus. And as Berruto got into position on a warm, spring afternoon six years ago, she heard the scream that would forever change her life.

"Oh my God! What's that on your leg?" the girl standing behind her yelled.

Startled, Berruto vigorously tried to brush away what she thought might be a bug or spider. But there was no insect clinging to her skin. What her teammate pointed to on her right calf was a strange, purplish-red spot that was bright, round, and raised.

"Eww!" several girls cried in unison as they moved closer, examining the dime-sized lesion with their noses crinkled.

"It's just a bump," Berruto protested, insisting that everyone get back to the choreography. A Band-Aid and Sheryl Crow's bubble gum hit "All I Wanna Do" was enough to divert the attention from her leg that day.

But soon, new bumps appeared. Berruto began hiding them by wearing sweat pants to practice instead of shorts, or by covering them with more Band-Aids. (If anyone asked, she told them she had cut herself shaving.) When she performed, she concealed the lesions with makeup and wore nylons. When bumps began erupting on her arms, she relied on long-sleeved outfits. She hoped none would show up on her face, because pimples were bad enough -- and these bumps made acne seem tame.

With a tall, slim figure and long, blonde hair, Berruto's attractive looks and outgoing personality placed her among the most popular kids in high school. But even she knew no one could recover from the social fallout of being a modern-day leper. She told no one of her lesions. "At 17, you're more concerned with what you look like than what might really be wrong with you," says Berruto, now 23. "The bumps were ugly and I was just hoping they would go away."

But they didn't. And while she could fool her peers for the remainder of her senior year, she couldn't fool her mother, who eventually caught on and sent her to the doctor. The odd bumps perplexed their family physician, who had seen nothing like them before. Worried, he referred her to a dermatologist. A biopsy confirmed the worst: The cells looked like an aggressive lymphoma, and Berruto would have to act quickly before the cancer spread from her skin into her bloodstream and to other organs.

Suddenly, as a teenager, she was faced with the prospect of chemotherapy and radiation. If the treatment were unsuccessful, she could die. And even if she were cured, the treatments could leave her unable to have children. In either case, she would be subjected to highly toxic regimens with side effects beyond infertility -- though her greatest fear at that age was losing her hair.

But she wouldn't die, or become infertile, or go bald. Not yet, anyway. As mysteriously as the bumps arrived, they disappeared. Without any treatment or drugs, her lesions miraculously healed themselves. The apparent cancer was gone -- for now. Though she did pray, Berruto's case isn't a medical miracle. Instead, she was diagnosed with an extremely rare and unique disease called Lymphomatoid Papulosis. LyP (pronounced as initials) translates to "cancerlike pimple."

LyP looks like cancer, can act like cancer, and can even kill like cancer. But unlike any other malignancy, it can spontaneously and inexplicably turn itself off. That doesn't mean Berruto is cured for good. Without warning or apparent cause, LyP usually reactivates to produce new lesions that come and go over the course of weeks or months for a lifetime. There is no way to know which batch, if any, will stay turned on long enough to metastasize to other parts of the body.

"Sometimes I freak out and wonder why I have to be the one with this weird disease," says Berruto, who is one of only a half-dozen people in the Bay Area known to suffer from LyP -- a one-in-a-million patient. Statistically, only about 5,000 "spotted ones" -- as LyP patients call themselves -- should exist worldwide. So far, only a few hundred have found each other on the Internet's single LyP Web site. The Cheetah Club, as it is known, is an exclusive one.

"Why couldn't I have just won the lottery?" Berruto wonders.

Indeed, for cancer research, she may already have done so.

What Julie Berruto's strange disease might reveal about the nature of cancer -- why it starts, how it progresses, and most importantly, what can make it stop -- gives some doctors reason to think the benefits of studying Lymphomatoid Papulosis could be far-reaching.

"Though rare, this little disease might be the perfect opportunity to find out how the body can fight off malignancies on its own," says Dr. Lawrence Gibson, a dermatologist at the Mayo Clinic's Rochester, Minnesota, campus. "Something about this disease keeps the cancer at bay, and if we can figure out what the cells are saying to each other [to stop the cancer], we could certainly apply the answer to other lymphomas."

The result, Gibson says, would be better and safer ways to treat common cancers that afflict millions -- ailments such as lymphomas, a diverse group of cancers that arise in certain blood cells. (One well-known lymphoma is Hodgkin's disease; though less common than the non-Hodgkin's variety, it is also considered the most curable of the lymphomas.) "Just think, what if a patient with Hodgkin's could fight his disease without chemotherapy or radiation? What if his body could keep the lymphoma in check on its own? That would be fantastic."

Such a notion is not science fiction, particularly for people like Berruto who live with LyP. Year after year, their lesions -- which look like aggressive Hodgkin's cells under the microscope -- continually erupt and heal without treatment as the patients enjoy otherwise healthy and productive, though cosmetically scarred, lives. The lesions can vary in size and severity with each onset. Berruto's, for example, can look like pimples in one cycle and larger, raised bumps in the next. Limited research shows only about 20 percent of LyP patients will ever develop full-blown lymphoma associated with their skin lesions, though there is some indication they may be prone to getting other, unrelated types of cancer in other parts of the body. The woman who received the first LyP diagnosis in 1967 is still alive -- and peppered with lesions.

About The Author

Joel P. Engardio


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