Glioblastoma patients, families meet with health department in Florida county

Posted at 11:14 PM, Apr 25, 2018

ST LUCIE COUNTY, Fla. — They’re not giving up until they get answers.

On Wednesday, glioblastoma patients and families who have had loved ones with the deadly brain cancer in St. Lucie County, met with officials from the Florida Department of Health in St. Lucie County.

READ MORE: St. Lucie County Glioblastoma Coverage

It was their first time meeting together since the health department revealed there is not a high number of glioblastoma cases in the county.

That was determined after a five-week review of the state’s cancer registry from 1996 to 2015. 

The research focused on looking at the demographics of the area to determine how many new cases are to be expected each year in the county.

Health officials determined St. Lucie County should see an average of 10 cases per year.

The registry does not, however, have data yet for 2016 or 2017.

Scripps station WPTV in West Palm Beach collected information from viewers who have glioblastoma or know of someone with glioblastoma in St. Lucie County to help provide some data for those two years.

For now, 2016 appears to have at least 15 cases diagnosed in St. Lucie County, according to WPTV.  

In 2017, it appears there were 11 cases from people who came forward with their information.

The information is not medically verified, but has been given to the department of health in St. Lucie County by WPTV’s Meghan McRoberts to further investigate.

The Health department said though the 2016 and 2017 numbers might be higher than the average of 10 cases, there is not a set formula for what number would be considered ’too high'. It would take further research.

People like Lenny Schelin, Jr. who are battling glioblastoma, were glad to hear the health department is still going to look into the local glioblastoma cases, regardless of the state data showing there is not a high local rate of the cancer.

“There’s still a lot of unknowns,” Schelin, Jr. said. He said he knows the number from the state’s cancer registry has some potential flaws. For example, it does not account for people who lived in St. Lucie County but were diagnosed with glioblastoma out of state.

“Too many people moved. Too many people get diagnosed somewhere else. Just too many variables,” Schelin, Jr. said.

The Florida Department of Health in St. Lucie County Administrator Clint Sperber, also noted the information from the state’s cancer registry does not look at specific addresses to evaluate exactly how close together the patients live.

That’s an issue to Kim Hart, whose mother is battling the disease.

“Finding out a younger person is going through it a mile from us… it’s unfair,” Hart said. Other patients’ families said some cases are on the same block and street.

Kevin Perry, Jr.’s dad is also battling GBM.

“They’re not here. They’re not looking at, 'Oh, five people within a small little area.' They’re just looking at numbers,” Perry, Jr. said.

But that’s where the local health department can step in and take a closer look at the proximity of the cases.

The glioblastoma of St. Lucie County support group is also committed to doing its own research to have the best possible chance of getting answers.

“We have a lot more work to do,” Hart said.

“It’s terrifying. I wonder if I’m sitting around waiting for something to happen to me or someone close to me or anybody in this area, like, if something’s causing it, I’m just very adamant that they need to figure it out,” Perry Jr. said.