SATELLITE BEACH, Fla. - The diagnosis was devastating: colon cancer at age 30.
It came as a complete shock to Julie Greenwalt, a Satellite Beach native and radiation oncologist in Jacksonville, who knows only too well that such cancer rarely strikes people under 40. Making it worse, the news arrived just 10 months after her best friend, a fellow Satellite High graduate, lost her battle with breast cancer, News 6 partner Florida Today reported.
"All I could think about was, 'I'm going to die,' " said Greenwalt, who'd just had her first child months before. "I couldn't handle the thought of my son not knowing me."
Then Greenwalt heard of other SHS alumni — at least 20 — all young, predominantly female, having been diagnosed with cancer within a few years of each other. She recovered. Three, including Greenwalt's friend, have passed.
Facebook accounts were discovered, emails exchanged and now a group of 17 survivors are united, demanding that their cases and those of their friends get wider attention and a reason for their suffering be discovered and thwarted.
The usual suspect is Patrick Air Force Base and a concoction of chemicals used there over decades that may now be lurking underground in water tables or in the very lagoon where they played and fished as children. But new science makes it unclear if the base or some other yet-to-be-found factors are at play.
This is a story of an urgent struggle between peoples' need for answers and the slow and uncertain pace of scientific research and government response.
State and federal authorities are working to determine if the cancers are truly linked — what researchers call a cluster — or just a freakish happenstance. Epidemiologists warn such investigations are lengthy, expensive and often inconclusive. The cause of many cancers remains unknown and true clusters are rare, they say.
The complex interplay of genes and infectious and chemical agents obscure cancer's many causes. Relatively small numbers of cases to work with, limited available data on occupational risks, lifestyle and demographic factors also complicate cluster investigations.
The discovery of groups of friends and neighbors becoming ill on central Brevard's beaches, however, is hardly new.
For decades, small pockets of people have suspected the base's radar facilities or chemicals and materiel that got dumped or buried in the ground were making them sick. Builders unearthed airplane parts, vehicle batteries and crushed barrels of petroleum during construction in South Patrick Shores. Now what appears to be the latest outbreak of cancers in the shadow of Patrick's control tower has focused attention again on what role, if any, the base has played.
The latest suspect: fire extinguishing foams used on the base could have infiltrated the local water table. But residents in Satellite Beach and South Patrick Shores get their potable water from Melbourne and Cocoa, not beach-side wells, though residents and schools regularly use groundwater on lawns and landscaping.
Fire foams fuel cancer fears
The survivors' cause has been bolstered by recent national attention to those firefighting foams and other military related contamination linked to cancers and other illnesses at Camp Lejeune in North Carolina. At that base, people drank, bathed in and cooked with tainted water. Here in Brevard, no one knows if, or how, people might have been exposed, or to what specifically.
There's also a conspiratorial urgency of sorts surrounding the firefighting compounds, because of recent federal attempts to hide new information showing that the health risks of these chemicalcocktails are worse than previously thought.
In May, POLITICO reported that the U.S. Environmental Protection Agency worked to bury a federal health study highlighting those risks, after an unnamed Trump administration aide warned in emails obtained by POLITICO it might trigger a "public relations nightmare." On Wednesday, the Trump administration released the report in question, POLITICO reported.
The fire foam chemicals, perfluorooctane sulfonate (PFOS) and perfluorooctanoic acid (PFOA), are unregulated. But science is finding that even at extremely low exposures, the compounds are implicated in some types of cancer, thyroid defects, immune suppression and pregnancy complications, according to a scientific panel that examined the chemicals from 2005 to 2013 and recent scientific studies.
Like petroleum and dry-cleaning solvent plumes, the compounds can migrate long distances in sandy soils like those on the beach. They have turned up in groundwater at Patrick Air Force base in 2014 and 2017 at thousands of times the federal government's current lifetime health advisory level for drinking water — one sample more than 61,000 times.
The federal drinking water lifetime health advisory for the chemicals is 70 parts per trillion, or about 70 grains of sand in an Olympic-sized swimming pool. One groundwater sample at Patrick drawn in 2014 measured 4.3 million parts per trillion. But residents here, as previously explained, do not drink or bathe in this water, adding to the mystery. In fact, it's unknown whether the chemicals extend beyond Patrick's borders.
Clusters defy proof
Greenwalt has no idea if, how, or to what specifically she and others at or around Satellite High might have been exposed years ago, only that it's probably worth looking into, given their young ages at the time of diagnosis and in such a short time span.
"It's really absolutely not normal for this many people in one high school to get cancer," Greenwalt said. "It's just very, very odd. It seems like all of my friends from high school are getting cancer."
Greenwalt urges current and former residents to monitor their health extra carefully, and if they were diagnosed with cancer at a young age, without a family history of cancer, to report it to the county or state health department as soon as possible.
Many researchers are loathe to leap into the minefield of cancer cluster investigations.
Nonetheless, state and federal health officials say they're taking the concerns in Brevard very seriously, with all the usual caveats about the Herculean hurdles to prove a cluster or its causes are beyond random chance. They also point to a previous investigation of the South Patrick Shores area in the early 1990s that found "no apparent public heath hazard."
"We're just beginning the investigation on that," Barry Inman, an epidemiologist at Brevard County Health Department, said of Greenwalt's concerns. "It will take quite a while to determine anything."
One hurdle to proving a cancer cluster in the Satellite Beach area is that clusters tend to be the same kind of cancers. "I am hearing many types of cancer," Inman said of the Brevard cases, adding that he did not yet have a specific number of cases so early in the investigation.
The decision about whether to — and how to — proceed with an investigation would be made by chronic disease epidemiologists at the Florida Department of Health in Tallahassee, Inman said.
Epidemiologists warn that definitive conclusions are unlikely.
"With the tens of thousands of these sorts of events that have been reported, unfortunately, we've never learned anything about the causes of disease from those events," said Dr. David A. Savitz, an epidemiologist at Brown University.
"I can guarantee there are zip codes with higher rates of those diseases — in Florida," Savitz added. "There's a huge random element to it. That guarantees some areas will have very high rates, even if there's nothing (causing it)."
Similar recent federal investigations of fire foams' cancer impacts have proven inconclusive. Residents were frustrated in 2016 when three communities near Horsham Air Guard Station, the former Naval Air Station-Joint Reserve Base Willow Grove, and the former Naval Air Warfare Center in Pennsylvania, turned up nothing beyond the norm.
"There's a lot we still don't know, but we have good reason to be concerned," Savitz said of the fire foam chemicals. "It's almost impossible in a given case, with one community, one cluster, to make that kind of causal inference," Savitz said. "You can't lump all cancers together. They all have different kinds of patterns and causes."
Nonetheless, Greenwalt, a 2003 SHS grad, says federal and state health officials need to take another look.
"We're too young to have cancer," Greenwalt said. "We were exposed. What about the five years (of students) behind us? Is the same thing going to happen to them."
So far there is no sign that there are more cases, which is why Greenwalt encourages residents to report all developments to the county.
Phasing out foams
Patrick Air Force Base began using firefighting foam that contains the fluorinated chemicals in 1970, including those that are now the focus of concern. In 2000, American manufacturers began phasing out the harmful compounds, and Patrick Air Force Base switched its fire crash rescue trucks in 2016 to what is supposed be a safer formula.
The chemicals were also used in industrial and consumer products to make the products resist stains, heat, water and grease. Examples include Teflon® cookware, waterproofing fabric and coating on fast food wrappers. Until several years ago, DuPont, made Teflon® at a plant in Parkersburg, West Virginia. The company faced multiple lawsuits by people who worked there, lived nearby or downstream of the factory.
The compounds build up in the body over time.The many ways they can enter the body complicates pinning down a "smoking gun" exposure. That includes drinking water, air, dust, consumer products, food such as fish and shellfish or food packaged in materials containing the compounds, such as popcorn, pizza boxes and fast food containers.
People also get exposed by touching carpets and other surfaces treated with the stain-proofing compounds.
No link yet has been found between the fire foam chemicals and colon cancer. A 2011 study of Inuit women in Greenland found a positive association between the compoundsand breast cancer but not a statistically significant one.
Still, the cancer cases Greenwalt kept hearing about among fellow Satellite High grads prompted her to contact the Centers for Disease Control and Prevention in Atlanta, to no avail. There weren't enough cases yet of the same kinds of cancer, she was told.
The debate was rekindled in May, after residents in Satellite and Cocoa Beach posted on Facebook a recent Military Times story about cancer concerns surrounding firefighting foams.
The story featured Kristen Emery, 41, who'd lived in Patrick Air Force Base housing and was diagnosed with Hodgkin's disease at 13. Dozens of local cancer survivors and relatives of those who didn't survive weighed in on social media with their theories about the causes.
Emery worries about soil exposure or the seafood she ate from Banana River. As a young girl, she fished and shrimped near the north end of the base, when her dad was stationed there from 1979 to 1981. She and her little brother, Gordon, would get covered head to toe in mud as they played in their yard.
She was sick all the time, she said, with continual nose bleeds, asthma attacks and frequent emergency room visits from kindergarten through second grade. Then Gordon got a tumor on his knee, prompting a trip to the Mayo Clinic. It was benign.
Several years later, at 13, a large lump grew on Emery's neck. She was exhausted all the time. Doctors thought she had mono or something related. The diagnosis stunned: Hodgkin's disease. Emery suspects her chemical exposure could be a factor in her daughter Emily's chromosomal abnormalities.
She thinks health officials dropped the ball in early 1990s, during an investigation of Hodgkin's disease, neurodegenerative diseases and other health concerns in the South Patrick Shores area.
"It's hard for me not to get emotional about it," Emery said. "We've know about this since the '90s. ... Instead of fixing it, they just want to cover it up because they don't want to be blamed. Meanwhile, we're going through hell just trying to survive."
No 'smoking gun' contamination sites
The Agency for Toxic Substances and Disease Registry, part of the U.S. Department of Health and Human Services, in 1992 reported on South Patrick Shores, finding what Savitz, the Brown epidemiologist, says would be "the normal mix of what you find in many, many communities."
A current Florida Department of Environmental Protection contamination database shows a few toxic sites at nearby gas stations, an auto repair shop and a dry cleaners. The cleaners is the closest, within a quarter mile, but is considered low risk and low priority for cleanup, because it's not near any wells used for drinking water.
"The question is, is (any potential contamination) reaching people?" Savitz asks.
Most of the concern regarding the fire foam compounds revolves around drinking water exposure, Savitz said, not breathing or skin contact.
Savitz served on the science panel that carried out exposure and health studies linked to Dupont's Washington Works Teflon® manufacturing plant in West Virginia. The panel determined the chemicals are linked with increased kidney and testicular cancer, thyroid disease, and most strongly with increased cholesterol levels.
Proof of other diseases, however, remains elusive. Savitz says there's no evidence that colorectal, Hodgkin's or other diseases are linked to the chemicals, but acknowledges much of the science is unsettled.
The chemicals defy "smoking gun" cause-effect relationships like cigarette smoking and lung cancer, he said. "With these environmental chemicals, it's somewhere between subtle to not there at all," he said. "I'm not saying without a doubt I can exonerate these chemicals," but the link so far has proven to be elusive.
Fire foam in our water?
Tests of Melbourne's and Cocoa's water systems for fluorinated chemicals in 2013 and 2014 detected none of the compounds, according to Florida Department of Environmental Protection data.
But due to rising concerns about the fire foam compounds, the military has embarked on a massive cleanup of 664 contaminated fire- and crash-training sites nationwide.
A March 2018 Department of Defense report found that all 28 groundwater samples recently taken at Patrick exceeded EPA lifetime health advisory level for fluorinated chemicals. Sampling showed 15 of 16 areas tested at Patrick and Cape Canaveral Air Force Station had the compounds at levels in the groundwater greater than EPA's advisory level.
"Groundwater, but not drinking water," Regina Butler, who manages environmental cleanups at Patrick and CCAFS, emphasized at a recent meeting of a committee that advises the base on its cleanups.
"We don't have a defined drinking water exposure pathway," Butler said. "At this time, we don't have additional plans for (fluorinated chemical) assessment or cleanup actions at the Cape or Patrick."
Butler says the Air Force would need the EPA first to come up with regulations for how much of the chemicals can be in the environment before it decides how and whether to investigate whether the compounds are present beyond the base's fence line into the surrounding communities.
1992 investigation ends in dead ends
For local cancer survivors, the recent attention on the newest chemical suspects is reminiscent of much older buried and above-ground suspects that drew angst and frustration in an early 1990s investigation that ended with a whimper.
"It's crazy to me that they dropped the investigation, if you knew it was hazardous ... and they did," Greenwalt said.
In 1991, more than 450 residents from South Patrick Shores turned up for a town hall that spilled over from Sea Park Elementary to Satellite Beach High School. Some sobbed in frustration.
Health concerns included Hodgkin's Disease, cancer rates and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a degenerative disease of nerve cells in the brain and the spinal cord that causes muscles to atrophy, leading some to lose the ability to speak, eat, move and breathe.
Media coverage at the time cited a dozen cases of Hodgkin’s disease by Patrick from 1967 to 1983, between Pineda Causeway and Sea Park Boulevard.
But the 1992 report by the U.S. Department of Health's Agency for Toxic Substances and Disease Registry found that the Satellite Beach zip code area actually had fewer cases of cancer than would be expected, in comparison to statewide averages. The report also concluded that the available data did not show people were being exposed to contamination that would be expected to cause adverse health effects.
"The soil and the groundwater sampling in the area did not indicate significant contamination," the report said. "Based on the available data, ATSDR considers this site to be of no apparent public health hazard."
But the report did note workers who excavated for homes there in the 1950s found a dump containing vehicle batteries and several crushed barrels and two "reportedly filled with oil." Workers removed the debris before construction, the report said.
Samples taken within two feet of the surface found lead, aluminum and other metals, organic chemicals and pesticides, but not at levels high enough to cause public health concerns, and didn't find any evidence of a contaminant plume.
While the radar of concern was removed in the mid 1990s, some local cancer survivors still suspect health impacts from the two remaining radars near the base's southern end.
And some science fuels those fears.
"It's been of concern for a long time. It's not without some merit," said Savitz, an epidemiologist at Brown. "The evidence that these kind of community exposures cause cancers is somewhere between negligible and very small."
School officials see nothing to fear
Greenwalt wonders about Satellite High, DeLaura Middle and other schools in the area. But Brevard school officials said they know of no evidence of an environmental problem at Satellite High or the other nearby schools in their historical radon, tap water, soil and air quality testing.
They said soil testing associated with a new auditorium built in the 1990s and other major building renovations on campus in the 2000s did not raise any environmental red flags. "Never any known issues," said Dane Theodore, assistant superintendent of facilities for Brevard Schools. "There was really nothing there."
District officials said they haven't heard any cancer concerns from parents, yet, or from the county's epidemiologist.
"Thousands and thousands of people have gone through there," Theodore said of Satellite High.
Satellite High and DeLaura are on Melbourne's water system, which also has raised no red flags about the drinking water that would prompt tests from the taps.
But all the assurances are little comfort to cancer survivors like Amie Morgan, who moved beachside from New York at age 3, attending DeLaura Middle and Satellite High.
Morgan, who now lives in Orlando, was diagnosed with breast cancer in 2013, at age 26, one of seven known breast cancer cases from SHS, all who graduated within a few years of each other.
"No doctor has considered me a high family risk, because I was only 26," Morgan said. "Now I am cancer free for two years."
In fact, the odds of a woman in her 20s developing breast cancer is 1 in 1,732, according to breastcancer.org, a nonprofit cancer support group.
Nor are expert reassurances much comfort to Kathleen Marler, whose son Ricky, was only 7 when he was diagnosed with t-cell lymphoblastic lymphoma, a rare, fast-growing non-Hodgkin's lymphoma.
Adding to the mystery and the worry, about a month ago, the previous owner of the Marler home on Harwood Avenue in Satellite Beach stopped by, curious to see what they'd done with the place. Turns out, she'd had non-Hodgkin's lymphoma, too.
"Is it going to happen again?" Kathleen Marler asks as Ricky taps away at a survival video game called Fortnite. "Is it just going to be swept under again?"
"There's just so much unknown," she added.
They used their well to water their yard for about a month, Marler said, but stopped. "As soon as I realized how gross the water was, I didn't care if we had grass or not," Kathleen Marler said.
Doctors removed tumors in Ricky's chest. He remained in a coma for two weeks, the most trying time in his mother's life.
"We're getting back," she said her eyes welling up as Ricky bounced on a grey leather couch as 10-year-olds do, still tapping away at Fortnite.
Victoria Hicks, 34, was diagnosed with stage three breast cancer on May 12, 2017, at age 33. Her son, Jack was only 5 years old at the time.
"I didn't want to leave my son," Hicks said. "You go into fight mode."
She learned her diagnosis right around the time of her son Jack's pre-kindergarten graduation ceremony. "I said to myself this would not be the last time I see my son in a cap and gown."
On her birthday, Jack shaved her head. "He's definitely the one that kept me going."
She's on her last round of chemotherapy, but like the other survivors, in her first rounds of questioning.
"Everything is a possibility," says Hicks. "I can't say for certain...It literally could be anything ... We've all kind of walked a similar path."
Copyright 2018 by WKMG ClickOrlando - All rights reserved.