Auburn has a suspicious accumulation of a rare cancer.
Five people who were either students or who worked on the campus during a specific time have been diagnosed with Uveal Melanoma. That’s five cases among thousands for a disease that typically affects five in one million.
The collection of cases is so peculiar that a team of oncologists, ophthalmologists, and epidemiologists from the Sidney Kimmel Cancer Center at Thomas Jefferson University are traveling from Philadelphia to Auburn to investigate. The team is working to spread the word so people can get eye exams to make sure they are not at risk.
Dr. Takami Sato is the K.Hasumi Professor of Medical Oncology at the Sidney Kimmel Cancer Center at Thomas Jefferson University. He said he grew interested in the accumulation of patients in Auburn when a young female patient came to his office.
“Then she says, ‘Yeah, interestingly three of my dormitory friends have the same disease’,” Sato said.
Sato found this amount of cases strange and began to ask questions.
“I found two male patients, one of them went to the same university, the other worked on the campus around the same time these patients lived in the same dormitory,” Sato said.
Lori Lee of Guntersville is one of the five people.
“I was there in the late 80’s and I graduated in 89. They actually found a spot on my eye in November of 2011 and then they watched it every six months,” Lee said. “And then, almost two years to the month in November 2013, they decided that it had changed.”
That spot was later to confirmed to be Uveal Melanoma. Lori considers herself lucky because her diagnosis came earlier than most for people diagnosed with that form of cancer.
“I’m a big advocate that everybody needs to at minimum have a yearly eye exam,” Lee said.
Eye exams are important for treating the disease, as there are rarely symptoms associated with Uveal Melanoma.
“I still have no symptoms. Not any symptoms other than mine was caught very early, so I did not lose my eye,” Lee said. “Two of the other girls I know of, it was caught much later and they lost their eye.”
According to the American Cancer Society, when the cancer is confined to the eye, the five-year survival rate is about 80 percent. But Uveal Melanoma can be very aggressive, and researchers are still working to come up with better treatment options.
Popular therapies that work for other cancers have not proven to be successful in this case, and five-year survival rates, once the cancer has spread, are about 15 percent.
Those statistics underscore the urgency for anyone who might be at a higher risk to have a dilated eye exam where doctors look at the back of the eye through the pupil. That’s why this upcoming discussion in Auburn about the five cases found there is important for spreading the word.
The team from Sidney Kimmel wants to know if there are more people who may be unaware of the accumulation of cases they’ve detected.
We asked administrators at Auburn University if they were aware of this Uveal Melanoma investigation. Both gave us a statement for our report.
Auburn University said:
The university encourages spreading the word about uveal melanoma and all types of cancer and the need for early detection, and it welcomes the cancer researchers looking into this rare cancer. Our understanding is the scientific community has not yet established what causes it, and there is no known causal connection that would indicate any student or employee is in danger. The university would act immediately if it knew of any unsafe condition on campus. The health and safety of our students and employees are of utmost importance. Tests are available through optometrists or ophthalmologists for anyone wishing to be tested.
We also contacted the City of Auburn, Director of Public Affairs David. D. Dorton said:
We would certainly be interested in finding out whether city leaders or the medical community should attend to try to understand what happened and what is going on.
We should point out that both entities told us they were not aware of the rare accumulation of Uveal Melanoma cases in Auburn.
The team from Sidney Kimmel Cancer Center at Thomas Jefferson University will be holding a public meeting in Auburn on February 10, 2018 at the Auburn Hotel and Conference Center. It begins at 10:00 AM. CBS 42 will live stream this meeting on wiat.com and on the CBS 42 Facebook page.
Auburn University Senior Editor in their Office of Communications and Marketing told us someone from Auburn’s Department of Risk Management and Safety will be attending that meeting.
In the first half hour, experts will discuss Uveal Melanoma. Then from 10:30 a.m. to noon they’ll explain the similarities between Auburn, Ala. and Huntersville, N.C.
Dr. Marlana Orloff told us they’ve learned lessons from a similar investigation in Huntersville, North Carolina they conducted where more than 20 young women were diagnosed with Uveal Melanoma within a 15-mile radius.
Dr. Marlana Orloff is a Uveal Oncologist at the Sidney Kimmel Cancer Center. She’s investigating patient accumulations of Uveal Melanoma in Alabama and North Carolina.
“Initially, when the first number of patients were diagnosed, there was an effort from the community, an effort from some of the patients’ families to get the state involved,” Orloff said. “Just to take a look, just to see if there was anything that was obvious that warranted a further look.This kind of led to some media coverage. And so people who would have otherwise not known what was going on all of a sudden knew that this was being investigated, so then other people had kind of come forward.”
Their investigation in North Carolina is ongoing.
“At the time we were investigating in North Carolina, the state health department was helpful to investigate this and the state gave us some funding to investigate this,” Orloff said.
Orloff told CBS 42 News that they reached out to Alabama two years ago for a standard incidence ratio to determine if the accumulation in Auburn might have been a cluster and found a major flaw in how these rare cancer cases are documented.
“When I was working with the state, they did provide me with some numbers for the periods that we had requested and it didn’t seem significant. So you couldn’t really use that data to move forward,” Orloff said. “However, we also had them do this for North Carolina and realize in both scenarios is that the way that those numbers are done because of the rarity of this disease is inherently flawed.”
If people come from all over the country to attend college in a town like Auburn, then they graduate and return home to their respective cities. If they were diagnosed with a rare cancer 10, 20 or 30 years later, it would be registered in the state where they currently reside.
“A lot of these patients are diagnosed out of state, there is often not a primary biopsy that’s done, that’s because it’s mostly a clinical diagnosis,” Orloff said. “There are some factors at play that make case reporting of this disease truly complicated. So I don’t know if you can trust the observed statistics the state actually receives.”
Orloff believes that there needs to be a national registry of Uveal Melanoma cases.
“All cases are included, and you could actually follow people over time,” Orloff said. “It’s like a zip code tracking and so you could follow people in sort of time and space and figure out even in 15 people got diagnosed in 15 different states in 2002, you could look back and realize that they were actually living in the same town in 1993, that’s ultimately what would need to happen in order to really see these trends in any large reliable scale.”
That’s why the team of researchers is coming to Auburn to discuss ways of reaching those people who need to be screened.
“Our major purpose of going there is to increase awareness and let them have more screenings, opthamalogists should be able to help,” Soto said. “For our research purposes, we need to collect more information regarding which direction we should go.”
There are people with ties to Auburn and Uveal Melanoma who want to see which direction that will be. The information learned in Auburn could be beneficial and unlocking some of the mystery surrounding this rare disease.
Susan Roberts McWilliams lost her husband Mark to Uveal Melanoma in 2014. He attended Auburn University in the early 90’s, and first alerted us to this team of researchers during the CBS 42 Local War on Cancer series in 2017.
McWilliams contacted us to tell us about her belief in the need for more research for rare cancers.
“Rare diseases don’t get nearly as much attention and funding for research,” McWilliams said. “Of course, a disease can seem very rare until your spouse or child turns out to have it.”
To stay on top of Auburn’s Ocular Melanoma efforts, visit their Facebook page by clicking here.