Cancer cluster designation: A double-edged sword?

GATE CITY – Official designations of cancer clusters across the U.S. are rare, and having a specific locality or area identified as such brings its own set of baggage for affected people, the public and officials.Virginia Department of Health Population Health Director Dr. Dane De Silva in December said that determining whether a special area represents an identifiable cancer depends on five criteria:-Are investigators and researchers seeing a greater than expected number?-Are the cancer types the same or can they be linked by a common exposure or risk factor?-Are they within a group of people?-Is it within a geographic area?-Is it over a period of time?Those questions have been on the minds of the public and local and state government officials for several months. VDH officials are expecting to release an update in June to a 2025 survey of 10 years of cancer cases in the county. The original study – released to the public in January – found no conclusive factors linking cases from 2014 to 2023.Many in the Scott County community have said the original study lacks context because the most recent two years of child cancer cases were not in final data for that study. The June update will include 2024's cases.De Silva in December noted that assigning a designation – if investigation does indicate a cluster of related cancers – could mean the federal Centers for Disease Control and Prevention and other agencies may get involved in some way. Locally Megan Smith, a county resident and oncology nurse, has coordinated support group Scott County Strong in reaction to what has been at least 16 child cancer cases documented by her, the group and parents since 2024.Smith said the lag in confirming cancer cases in the Virginia Cancer Registry affects VDH investigation into factors related to the 16 and earlier cases."My biggest [concern] this is," said Smith. "When we had the meeting in January with the VDH and the Cancer Registry, they said that they give physicians six months to enter the diagnosis. Cancer isn't something they should wait to record. We're in the year 2026. We've got the fastest internet that we've ever had and, from my understanding, VDH still uses a lot of paper charting and so does the Registry."Smith has been communicating with national cancer policy advocacy group Trevor's Trek get lawmakers to fix the lag for Virginia and other states' cancer registries."In an incidence like Scott County is having, of course they're not going to see an issue until two years from now," said Smith. "How many more kids are we going to have two years from now?" "It can take a doctor three to six months to confirm it," said Laura Lane, mother of B-cell leukemia patient Hagen. "I'd talked in depth with Megan (Smith). I have some familiarity in that and I was shocked."Lane said a faster turnaround is needed for reporting diagnoses. She cited how federal health officials were able to get COVID-19 case data confirmed and reported during the pandemic."I'm grateful for everybody who's digging into this," said Ashley Culbertson, mother of cancer patient Avyn, "because, if anything, it's just gaining momentum and getting the awareness out there that needs to be out there about childhood cancer." Finding out whether there is a definable cancer cluster in Scott County leaves multiple concerns hanging over the public, said Scott County Board of Supervisors Chair Chris Maness."If there is a cancer cluster in Scott County, that's going to have a cooling effect on everything," said Maness. "People won't move here, all the way down to tourism and everything else.""It's something that we as a county really want to get to the bottom of," Maness added. "If there is a problem, we need to find it and address it as quickly as possible and we need to get as much state and federal help as we can. We're just a county and we don't have the huge budget or resources to find and mitigate the problem if there were an issue."Supervisor-at-Large Stephanie Addington – the board's designated public contact for the cancer situation – credited Smith for helping make information available to the community."I think Megan does phenomenal as being that liaison," said Addington. "I like to be her point of contact if she needs anything from the county. For this, the most important thing is that we support these families. That's the key."Public concern over the child cancer situation has brought together the community, Addington said, and that sense of community needs to continue."It's still a crisis," said Addington. "Whether or not they decide that cluster, it's not going to change any of us. It will make us more aware, obviously, but we're still going to pour into these families like we have been … We're all family here. Everybody knows everybody. All these kids probably know each other in some form or fashion. That's where you get that sense of community and county.""If we establish there's no cluster," said Maness, "we still have to come together as a community." A legislator's view Virginia Del. Terry Kilgore, R-45th, is a Scott County native who has also watched developments in the county cancer investigation."The key point is that we all want this addressed," said Kilgore. "We want to know if there is some environmental factor connecting the cases, and we'd like to determine what cause or causes might be involved. The public wants to know."VDH has been working on the Scott County investigation and update, Kilgore said."I feel (VDH) have been working hard on this," said Kilgore. "They've been helpful when I've talked with them, but their hands have been tied by getting information and with the Tennessee (cancer registry) lag as well. I just hope we're able to find out more information and that the Department of Health continues to share information with our citizens." Data Smith and Kilgore still question how the state's cancer registry continues facing a two-year lag in case diagnoses' conformation."As soon as that diagnosis comes in, let's get it in the computer and let's get it rolling," said Smith. "It's nothing to play around with. Whenever COVID was going around and you had all this testing, it was reported to the CDC immediately and those confirmations were going out like that. So, what about cancer? How were they getting those so quickly but it takes two years to get data back from cancer? It just doesn't work.""In the society we live it, there's so many advances in technology and communication," said Kilgore. "I don't understand the lag time. It's doesn't seem normal to me.""(VDH) has done an enormous amount of investigating into this, but the data was the hindrance to them because they couldn't go back and look into our current cases," said Addington. "They were able to look back at those 10 (years). The time frame is what's the problem, I think. Given their ability to get more data, I think they have the right things in place."