Rare cancer cases are ‘under-reported’

http://republicanherald.com/news/rare-cancer-cases-are-under-reported-1.1140188
BY STEPHEN J. PYTAK (STAFF WRITER spytak@republicanherald.com)
Published: May 1, 2011

NEW PHILADELPHIA – A blood disease which has haunted people in the county living near coal waste sites may be on the rise, Dr. Paul I. Roda of Geisinger Hazleton Cancer Center said Saturday.

Or cases of polycythemia vera may have always been higher than area physicians have realized, Roda said, “because they’re under-reported. I believe they’ve been high all along, just never fully appreciated.”

Roda, who works with PV cases through the Geisinger Health Network, gave some insights on the disease to more than 30 area health care providers at the start of the ninth annual Simon Kramer Institute Oncologic Symposium.

Polycythemia vera is a rare but treatable form of blood cancer found at elevated levels in Schuylkill, Luzerne and Carbon counties. Many studies are still being done on PV to determine how it occurs. It’s widely believed its victims are people who have grown up near coal waste and superfund sites, Roda said.

According to the website for the state Department of Health, www.health.state.pa.us, there were 412 cases of polycythemia vera in the state between 2001-02, including 14 in Schuylkill County.

No other statistics regarding PV could be located on the department’s website Saturday night.

“Between 2004 and 2009, we identified approximately 130 cases in the entire Geisinger Health Network. I do not have numbers for specific counties,” Roda said.

He believes over the years, cases have been under-reported.

“One reason is, to start with, the state registry was set on a hospitalized basis. If you put Mr. Smith in the hospital because he had lung cancer, that gets reported. But if you’re only being seen in the office, that doesn’t get reported. It’s a matter of where they’re seen and where these cases get reported,” Roda said.

Studies are still being done to determine who is at risk for the disease.

“We still don’t have something in black and white which will tell people ‘yes you’re at risk’ or ‘no you’re not at risk.’ My experience says that the incidence is high. Until we know for certain, it certainly behooves everyone to check their blood counts once a year,” Roda said.

It’s typically found in people age 55 and up, he said.

“Since this is a disease of patients who are 55 years of age or older, you don’t have to worry about this in 20-year-olds,” Roda said.

People who believe they are infected should first go to their doctor for a general blood test and a complete blood count, Roda said.

“A $10 CBC is more than adequate. Quite simply, if the patient’s CBC is normal, if they have a normal hemoglobin, white count and platelet count, you don’t have to worry,” he said.

However, if the patient has an abnormal blood count, an increased red cell mass or thrombosis, that person might want to take a test to determine if they have what’s called a “JAK2 mutation.” It’s a genetic change found in about 9 out of 10 people with PV, Roda said.

“That (test) could cost up to $2,000,” Roda said.

To get a JAK2 blood test, visit a healthcare provider, Roda said.