DURHAM – At times, doctors cried and patients laughed.
And that flipped script of normal expectations provided revealing insight into the search for answers – and the accompanying frustrations and fears – associated with expanding efforts to learn more about ocular melanoma (OM).
Dr. Marlana Orloff, entrenched in the effort for four years, teared up when acknowledging she has become close with the patients and families involved and understands the anxiety connected with not finding answers.
“This should be moving faster, she said. “When you work on something like this, it’s hard. You develop friendships and you feel more pressure to figure out what’s going on.”
That same day, Joe Wagner, who lost an eye and has coped with assorted other ailments since being diagnosed with OM more than a decade ago, couldn’t contain his smile when he described a panel discussion about the rare cancer as “an eye-opening experience.”
“You need to have a sense of humor to deal with something like this,” Wagner added.
The range of emotions was a built-in element of the eighth annual “Eyes on a Cure” patient and caregiver national symposium in Durham April 5-7. Hosted by the Melanoma Research Foundation’s CURE OM initiative and with more than 130 participants, the event included updates on research blended with emotional stories of OM’s impact. And the Lake Norman region – through patients and families tied to the mysterious collection of local cases and medical specialists active in research efforts – featured prominently in the proceedings.
Jessica Boesmiller, a Cornelius resident diagnosed in 2017 at age 37 and a late addition to a pool of 22 patients included in geospatial and genetic studies of regional OM cases, was among the guest speakers.
Presenters also included Huntersville’s Kenny and Sue Colbert, whose 28-year-old daughter Kenan died from OM complications in 2014. The Colberts, along with CURE OM and its co-founder Dr. Sara Selig – whose husband Gregg was also an OM victim – are acknowledged as driving forces behind increased national OM awareness and research. The Colberts and others have also been relentless in promoting a specific search for clues about why an eye cancer diagnosed in only about 2,500 people per year in the entire United States has been diagnosed more than 20 times in the north Mecklenburg/Lake Norman area since 2001.
Patients from the local study group – Huntersville’s Sue Hunt, former area resident Crystal Pridgen and Troutman resident Wagner – also attended.
In her presentation, Boesmiller addressed the complications of balancing privacy with the importance of spreading awareness about the cancer.
In a summary triggering smiles and tears, Boesmiller acknowledged that because she was diagnosed when she was seven-months pregnant with twins, her case drew added attention.
“I was diagnosed at 31 weeks,” she said, adding she went to the doctor thinking she might need contact lenses and walked out with a cancer diagnosis. “I had enucleation (removal of the cancerous eye) at 34 weeks and delivered twins at 37 weeks.”
She said she didn’t necessarily want to go public with her story, and understood how others might feel the same way, but the fact that “people in Huntersville, Cornelius and Davidson were already looking for answers” convinced her to share.
The Colberts, who began pushing for research when Kenan was diagnosed in 2009, openly shared the emotions and ultimate devastation associated with their daughter’s five-year battle.
Accompanied by photos depicting good days along the way, and illustrating Kenan’s upbeat attitude even when the medical updates were disheartening, the Colberts re-lived their journey. The presentation provided insight about their determination to help other families avoid the heartbreak, while also demonstrating, despite the sorrow, how the unimaginable can be endured.
After showing what she described as the “last photo of my baby” taken just a few days before Kenan died, Sue Colbert admitted that, at that time, she was ready to retreat.
“I just wanted to pull the covers over my head,” she said. “But I have a strong husband, who got mad.”
Kenny Colbert told the group it’s not easy revisiting the pain, but it’s part of the process to encourage continued research.
“It’s tough to do these things,” he said. But he added that he concluded years ago that to raise awareness and encourage officials and agencies to investigate OM, he would “have to get people scared, get people angry and have to embarrass some people.”
Experts engaged in the effort
The national CURE OM event also included participation by many of the medical and research professionals directly involved in north Mecklenburg-focused research. Dr. Michael Brennan, a retired ophthalmologist from Burlington who has coordinated local research efforts for several years, took part in multiple panel discussions. As did Orloff, a medical oncologist from Thomas Jefferson University in Philadelphia who has been part of the local research effort since 2015.
Dr. Richard Carvajal, supervising a current genome sequencing research project at Columbia University that includes tumor samples from local patients, and Dr. Miguel Materin, an ocular oncologist who leads the Duke Eye Center at Duke University and is in steady contact with Brennan and Orloff about the Huntersville cases, were also featured speakers.
Their presentations about ongoing clinical trials and research included references to “the Huntersville cases” as did presentations by individuals connected to research related to a rash of OM cases tied to Auburn University in Alabama.
Dr. John Mason, an ocular oncologist with the University of Alabama School of Medicine, said the study of Auburn-connected patients will follow the approach – patient involvement, geospatial and genetics analysis and eventual environmental testing – established in Huntersville.
And Dr. Fred Kam, medical director at Auburn, said the unknowns of OM hit him and the Auburn community “like a tsunami,” but he felt fortunate to have access to the information and insight already gained in Huntersville.