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Tuesday, 11 April 2017 16:50

Years in the making, OM research finally starts

Written by  Lee Sullivan
Robin Legg, center, shared details about her daughter Meredith’s life during an information-gathering interview with John Cassels and Dr. Marlana Orloff. Robin Legg, center, shared details about her daughter Meredith’s life during an information-gathering interview with John Cassels and Dr. Marlana Orloff. Lee Sullivan

A weekend of interviews begins geospatial analysis of victims of rare eye cancer.

HUNTERSVILLE, N.C. — A determined quest that concerned parents began nearly four years ago has finally resulted in the start of a detailed scientific search for clues related to the high occurrence rate of a rare eye cancer in the Huntersville community.

Environmental scientist John Cassels and melanoma specialist and university instructor Dr. Marlana Orloff arrived in the Lake Norman area Saturday afternoon, and by Sunday evening had already conducted three interviews as part of the week-long first phase of a three-pronged geospatial analysis designed to compile information about local ocular melanoma cases and provide a guide to enhance future research.

Cassels, principal scientist with Pennsylvania-based Geodesy Inc., is supervising the collection of patient biographical information, historical data and environmental factors that, with additional input from noted epidemiologist Dr. Andy Olshan from the University of North Carolina, will be merged into a multi-dimensional report identifying and evaluating commonalities that could form a valuable foundation for more targeted investigative efforts.

Orloff, a medical oncologist and uveal melanoma expert affiliated with Thomas Jefferson University Hospital in Philadelphia, has a direct link to the local issue as a physician who provided treatment for three of the ocular melanoma (OM) patients from Huntersville and as a primary member of the expanding nationwide network of eye care and cancer specialists who have taken an involved interest in the local cases. She joined Cassels during the first three days of his research to add a clinical perspective to patient conversations and remain connected to the patients and families.

“I know it has been frustrating for them, and I know when this first came to light, the parents were having a hard time being heard,” Orloff said Monday morning at Huntersville Town Hall during a break between meetings. “Understanding at least part of what they have dealt with, I wanted to be here to see how far they have come, and I wanted to be here to help them see that everything they have done has led to this.”

And the “this” she referenced is Cassels’ hands-on, science-based compilation of factors that may provide clues — or at least a clearer path to explore — to learn why, in the last 10 years, 12 people with residential or occupational ties to southwestern Huntersville have been diagnosed with an extremely rare type of cancer that statistics indicate is only found in five to six people per million each year in the United States.

Cassels’ mission is to gather specific personal histories from patients and their families, along with historic geographical and environmental details about the Huntersville area, to incorporate into a single bundle illustrating similarities, overlapping lifelines and other possible connections.

“I’m asking the patients and the families about everything, from the beginning of their lives to the moment of diagnosis,” Cassels said Monday as he, Orloff and Dr. Michael Brennan, a retired ophthalmologist who has become the primary liaison between the Huntersville OM group and the medical community, waited for their next appointment. “We’ve already heard some new information that has increased interest in a few locations, but the goal is to learn everything we can and include every detail so the analysis will be complete.”

In describing his research, Cassels says a Rubik’s Cube provides a practical illustration of the type of multi-dimensional report he is trying to create.

“When you look at just one level, you see a collection of squares and an assortment of colors,” Cassels said, “but as you work your way down through the other layers, you get a bigger picture, a collective view. And you can’t just consider one side, you have to see what’s inside.”

And when you view the various layers as different times in a patient’s life, and then compare patient “cubes” to others, you start to get an idea of the overall graphic Cassels is developing.

“Locations are a part of this, but it’s not just places on a map, it’s points in space and time and other details relevant to each patient’s experience,” Cassels said, adding that he is using the most up-to-date mapping and geospatial research tools for the Huntersville project.

He also said the Huntersville study is different from most of the work he’s done — including waterway analysis in the wake of Superstorm Sandy in New Jersey in 2013 and environmental health risk assessments after the BP oil spill in the Gulf of Mexico in 2010 — since establishing Geodesy 19 years ago.

“Instead of many of the past studies where we have been looking at something and evaluating potential future health risks, this is an outcome-based study where we are trying to identify something that may have contributed to a health issue,” Cassels said. “But gathering the most information possible, from as many sources as possible, is still a vital part of the research.”

Long road to research

The face-to-face interviews to collect information for the geospatial analysis, which undoubtedly included patient references to how long they have waited to tell their stories, began the morning after Cassels and Orloff arrived. Sunday morning, joined by Brennan, they met with Summer Heath, a 23-year-old graduate of Hopewell High School in Huntersville who is the youngest member of the 12-patient Huntersville cohort targeted in the investigation. Heath was diagnosed at 19 — 40 to 50 years younger than the average OM patient — and is one of five women in the local cancer cluster diagnosed at an age well below the normal OM parameters.

Sunday afternoon, the group met with Robin Legg, the mother of OM victim and 2005 Hopewell High School graduate Meredith Legg Stapleton. Meredith died in February 2014 at age 26 as a result of OM complications.

Sunday night, Cassels, Orloff and Brennan met with Sue and Kenny Colbert, the parents of Kenan Colbert Koll. Kenan, a 2003 graduate of Hopewell High School, died in May 2014 at age 28.

The eerily similar medical paths of Meredith and Kenan, both diagnosed in 2009, fueled the first pleas for more information about the cancer and an increased awareness of OM in the Huntersville area. Sharing on social media led to the 2013 discovery that, in addition to Summer Heath, two other young women with residential ties to southwestern Huntersville — Vicki Kerecman and Courtney Benson — had also been diagnosed.

A push from parents, patients and others — and revelations about more cases with Huntersville ties — resulted in a formulaic survey and paperwork review by the Mecklenburg County Department of Health, which concluded that there wasn’t a known link to the cases. The calls for closer scrutiny also resulted in a later review of historic and environmental records by the Hart-Hickman firm in Charlotte, financed by Charlotte-Mecklenburg Schools. The review concluded there was no evidence to support a more thorough examination of the area at and around Hopewell High School.

But a group organized in 2015 by Brennan, who was asked by his friend Dr. Randall Williams, then deputy secretary of the North Carolina Department of Health and Human Services, to put together a task force to examine the Huntersville cases, reached a different conclusion.

At that point, Brennan, Orloff and others, including leaders of ophthalmology and oncology programs at UNC and Duke University, began working with members of the Huntersville OM cluster to spread awareness and encourage a closer review of the local cases. Those efforts have led to a focus on Huntersville’s medical mystery at state, national and international conferences of medical professionals, researchers and melanoma support groups.

Last summer, through the efforts of Sen. Jeff Tarte from Cornelius, the Town of Huntersville received a $100,000 state grant to finance an investigation of the cancer cluster. In December, following nine months of discussions, the town opted to hire Hart-Hickman to design a plan for obtaining soil, water and air samples around Hopewell High School and in other places in and around town. A few months later, Hart-Hickman officials reported back to the town that, without clear guidance about what, exactly, to look for, they didn’t view environmental testing as an efficient or potentially productive use of the grant money.

Soon after, as a result of continued efforts to promote local research, Brennan’s task force presented a proposal that included Cassels’ geospatial analysis of the region as the preferred first phase of a master plan. Last Tuesday, after delaying a vote on the matter the night before because some information about the proposal was unexplained, Huntersville commissioners agreed to authorize the research and designate $14,600 of the grant money to fund Cassels’ work.

After a busy Sunday, that work continued Monday and Tuesday with more meetings with patients and family members. And while Orloff’s commitments required her to return to Philadelphia Tuesday night, Cassels and Brennan plan to continue the gathering of patient details and other information throughout the week.

“I want to talk with engineers and local historians, anyone who can provide insight about the community,” Cassels said. “There’s a place for everything. All of it helps create the package we are putting together.”

Once the collection of details is completed, the second phase of Cassels’ project will involve consultation and collaboration with UNC’s Olshan. Input from the epidemiology perspective will help direct future research, which could involve field work or more meetings with local residents, before the third and final part of Cassels’ work — preparation of a map illustrating all the environmental and health facts and the timeline references gathered during his research — begins.

Cassels expects the map to be completed by mid to late summer and presentations of his findings to OM patients and family members, and to the general public at open meetings in Huntersville, are included in the outline of the project.

Brennan said he also expects Cassels’ compilation of data will provide a “road map” for Hart-Hickman to use to reevaluate its approach to environmental testing options.

“The geospatial part of this is a vital first step,” Brennan said. “And this research, along with genetic testing and consultation, tissue comparison and environmental examinations are all part of the plan.”

And that plan, according to Orloff, could establish a blueprint to apply in future investigations.

“This is a unique situation, but every cancer cluster is unique,” she said. “The approach to evaluating a cluster of cancer cases does — and does not — have an agreed upon path, but this multi-prong method using geospatial, genetics and tissue testing could became an approach applied in other areas.”

While Cassels described the preparation of a reference map as basically a support tool for future medical research, he said he’s pleased to be a part of the search for answers.

“I feel close to this,” he said. “My mother died of a brain tumor and I know what it’s like to want to know more, to want to have a better understanding of why something happened. This is a way for me to help give something back.”

Although they all hesitated to use “boots on the ground” to describe this week’s efforts, Cassels, Orloff and Brennan, in different ways and at different times, acknowledged that those they have met have expressed an appreciation that, at last, someone is listening.

4 comments

  • Comment Link Mike Busch Wednesday, 26 April 2017 07:30 posted by Mike Busch

    My name is Mike Busch, I live in upstate New York, I am a survivor of OM. I was diagnosed in November 2012. My tumor was rather large 11mm, but since my plaque surgery it has shrunk to 4.2 mm. When the first news report came out about the cluster some time ago, even though I live nowhere near Huntersville, I have taken a big interest. My time with the cancer is come and gone, I just need to keep clean. I have lost the sight in my eye but have decided to keep it.
    The reason I am so interested in this because back when I first read about this, the news story stated that the NC Department of Health was going to wait a year to investigate this cluster. I e-mailed the Governor’s office and I implored him to get the Health Department to do a study, but I guess that the original 8 people were not enough, so they waited to the number was 12.
    I am hoping that if a cause is found, it might lead to a cure and a warning for others to avoid this cause. I think Wells Eye is one of the groups in this study, they are one of the United States best institutions for this cancer. Personally I went to Slone Kettering in New York because of demographics. I will be following this closely, and I have already contacted 60 Minutes to see if they would do a segment on Huntersville, I figure the more this gest in the public’s eye, the more the Government will do.

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  • Comment Link Edie Kello Thursday, 13 April 2017 22:55 posted by Edie Kello

    I look forward to more information on this study.

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  • Comment Link Kim Jonas Thursday, 13 April 2017 22:01 posted by Kim Jonas

    Thank you for your efforts...we look forward to your findings.

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  • Comment Link Sue Hunt Thursday, 13 April 2017 21:28 posted by Sue Hunt

    My name is Sue Hunt. I was diagnosed with OM in November 2009. I am a patient of Wills Eye. I lived in the Hamptons subdivision, in Huntersville and moved to Cornelius. I have walked the OM walk the past two years but not sure if my name has made the list of Huntersville people with OM. If you need any other information, I can be reached at 704-996-8395
    Thank you,
    Sue Hunt

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