Four college friends diagnosed with the same rare eye cancer are looking for answers

Four college friends since the late 1980s have contracted the same deadly cancer — one so rare that it is diagnosed in roughly 5 out of 1 million people each year.

So Ashley McCrary, Juleigh Green, Allison Allred and Lori Lee are trying to find out why they have ocular melanoma as they strive to raise awareness about the aggressive eye cancer.

“It was just one of those shocking things, because how often do you hear of somebody having to have their eye removed because of cancer?” Ms. McCrary said in an interview with The Washington Times.

When her cancer was diagnosed in 2012, her doctor was dumbfounded that her friends suffered from the same disease, she said.

“He kept emphatically telling me this was not possible — and so it was, literally, at the onset, this is very unusual,” Ms. McCrary said.

Ocular melanoma, which can spread quickly throughout the body, is diagnosed in about 2,500 people in the U.S. each year — usually older white men. Typical treatment can include radiation, chemotherapy or the removal of the infected eyeball.

Ms. McCrary, Ms. Green and Ms. Allred each has had an eye removed. Ms. Lee was able to keep her eye, but the cancer spread to her brain.

“What we’re hoping is that if you do research and you can find a cause, you can hopefully find a cure,” Ms. McCrary said.

All four women were Auburn University students in the late 1980s and early 1990s. Last year, Ms. McCrary set up a Facebook page to find other people with the cancer who also attended or worked at Auburn around that time. So far, she has found 36.

Ms. McCrary is working with the Alabama Department of Health and the Centers for Disease Control and Prevention to determine if the similarities should prompt an investigation of a possible “cancer cluster,” where the cause can be a carcinogen in the environment.

“You hear people’s stories, and it’s — for it to be such a rare cancer — it’s one of those things that doesn’t feel so rare,” she said. “I think the face of [this cancer] is about to change.”

Dr. Justin T. George, director of cancer epidemiology at the Alabama Department of Public Health, is trying to verify Ms. McCrary’s list of patients who share the same cancer diagnosis and have spent time at Auburn.

“We’ve never looked at people who just attended a college. … This is definitely not a traditional cancer cluster, and in fact it would be too early to even call this a cluster,” Dr. George said.

Complicating matters is that there is no known environmental cause for ocular, or uveal, melanoma. A cancer cluster among dentists that was investigated by the CDC found that exposure to chemicals during the cleaning of dental tools was responsible for several diagnoses. Researchers were able to identify the dentists quickly because each case was diagnosed in Virginia.

People with ocular cancer, however, likely are scattered across the country, and the disease is diagnosed in multiple states if they are Auburn alumni. Health care officials are less likely to connect their diagnoses to their time in Alabama.

Auburn University officials told CBS News that they hope research and awareness will advance the prevention and treatment of the disease.

Ms. McCrary and her network are in touch with researchers in North Carolina, where a similar scenario has played out in the small town of Huntersville. After two young women who attended high school together were found to have ocular melanoma, some local folks came forward with the same diagnosis: at least 23 from three towns with a total population of about 100,000.

“Initially, we couldn’t get the state or the county involved in looking into this coincidence,” Huntersville Mayor John Aneralla told The Times.

In July 2016, the town received a state grant for $100,000 to investigate possible environmental causes.

That geospatial study, led by Geodesy Inc. scientist John Cassels, helped determine the most concentrated area that diagnosed patients had in common, although it provided little insight or evidence about what could have contributed to the cancer.

Genetic testing also didn’t yield conclusive answers. Tissue from the tumors is being tested, and results are expected in the near future, Mr. Anarella said.

Researchers will use remaining grant money to test soil, water and air in areas highlighted by Mr. Cassels’ report.

“The thinking was we didn’t have a real targeted area that we could say all these people lived, worked and played,” Mr. Anarella said. “Now we have more data that says, ’OK, maybe we should test here.’”

Ms. McCrary and her network are hoping to raise funds for a similar study of the Auburn cases. She also hopes the increased attention to their situation will encourage more people to have annual eye exams, the only way to detect ocular melanoma.

The cancer develops between the uvea, a thin layer of blood vessels behind the retina, and the white of the eyeball.

Initial signs and symptoms are difficult to identify but could include changes in vision or a spot on their iris. An ophthalmologist at first may diagnose a detached retina, which the cancer can cause.

Ms. Green and Ms. Allred saw eye doctors for the first time in their late 20s and early 30s after seeing bright flashes of light. Ms. McCrary said she noticed black spots in her eye.

Ms. McCrary said people across the country and around the world have sent her emails expressing gratitude for focusing attention on the disease.

“The response has been overwhelming and humbling as people share their stories who have been diagnosed,” she said. “They’ve told me, ’I have to have my eye removed, and I look at the four of ya’ll and I realize it’s going to be OK.’”