Rare cancers group in Frisco neighborhood

Will Steele, 34, of Frisco was diagnosed in February this year with desmoplastic small round cell tumor (DSRCT), an aggressive sarcoma (cancer of the soft tissue and/or bone) so rare that the Texas Cancer Registry only reports between three and eight cases a year statewide. And yet, 20-year-old Joffrey Swieczkowski, who lives about a mile away from the Steele family, received a DSRCT cancer diagnosis in September.

The coincidences continue.

Two local girls in high school also have rare forms of cancer, Ewing’s sarcoma. DSRCT is a combination of both Ewing’s sarcoma and Wilms’ tumor. One of the girls lives in the same neighborhood, Plantation Resort, as the Steele family.

Dr. Jon Trent is an associate professor of medicine at MD Anderson’s Department of Sarcoma Medical Oncology in Houston. He said both DSRCT and Ewing’s are very rare diseases. There are only a few hundred cases in the United States every year.

“Where there are four rare cancers in a small area, you could be concerned about an environmental exposure,” Trent said. “It certainly could be due to really bad luck and chance, but it’s highly unlikely.”

It is very difficult to find out what causes rare cancers, because there are not enough cases to study, he said.

“Presumably, there is some kind of genetic event, whether that is due to something in the environment or a mistake internally in the cell,” Trent said.

The Texas Cancer Registry’s website defines a cancer cluster as the occurrence of a greater-than-expected number of cases within a group of people, a geographic area or a period of time. Christine Mann, assistant press officer for the Texas Department of State Health Services, said it would be difficult for the state to evaluate if the Frisco residents are indeed a part of a cancer cluster.

“There’s no statistical data on that cancer in Collin County,” Mann said.

The records, which go back to 2001, show no cases of DSRCT in the geographic region. Mann said recent diagnoses from this year would not yet be updated in the cancer registry and that there is little known about the possible environmental factors that could cause or precipitate growth for this type of cancer.

Still, Steele and Swieczkowski were both healthy before their sudden health problems. Steele, an athlete since middle school, was a semi-professional runner, often running between eight and 10 miles a day.

“We were really surprised by his diagnosis,” his wife, Kerri, said. “He rode his bike to work every day.”

The father of three found a lump in January of this year that eventually led to the discovery of more tumors.

“His entire abdominal cavity, organs and lymph nodes were all full of tumors,” Kerri said.

Doctors told the Steele family that Will had from a year to 18 months left to live.

Swieczkowski’s diagnosis came as a similar surprise. His mother, Rebecca, noticed her son becoming extremely fatigued throughout the summer. He worked on changing his diet and adding exercise, but then stomach pains surfaced. Joffrey was misdiagnosed several times before DSRCT was confirmed.

“That’s what’s so unusual – he was so completely healthy, living and eating,” Rebecca said. “He never smoked or did drugs or alcohol. You have no hints at all. We don’t really have cancers in our family at all.”

Joffrey was also active outdoors. As a former marching band member at Centennial High School, he practiced in the school’s parking lot, and Rebecca said he spent most of his weekends over at two friends’ houses in Plantation Resort.

The families have not yet been able to get together at the same time to discuss possible commonalities as they focus on chemotherapy treatments and its side effects, but Rebecca is anxious with questions.

“What was in the soil?” she asked. “Last winter we had lots and lots of rain and more snow that broke records. You just don’t know what really triggers it, but they were all outside in this area.”

The families speculated that Exide Technologies, a battery-recyling plant about five miles north and west of Plantation Resort, could have contributed to the environmental catalyst. Historically, wastewater from Exide’s facility used to be discharged to the then-operating Stewart Creek wastewater treatment plant. The wastewater contained certain concentrations of lead and cadmium, known human carcinogens, which Exide officials said could have ended up in the sludge-drying beds of the treatment plant.

However, topographical maps of the city show that water near the plant would flow in the southwest direction, away from Plantation Resort. City officials said the prevailing winds blow northeast of the plant, which does not put Plantation Resort in its direct path.

Last Saturday, more than 250 other runners joined together in the Frisco Trails community to raise money for the Steele family and help out with the onslaught of medical bills. Wim Schalken of The Trails Runners helped organize Will’s Run after neighbor Kathy Dann approached the running group.

“This is so close to home, and we realize that this could happen to any of us,” Schalken said. “It’s like the typical Frisco family, and it just makes you humble. You have to appreciate every day that you have.”

Visit www.willsrun.com for information.

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