Groups Of Women Are Getting Ocular Melanoma & Nobody Knows Why

An alarming number of women have been diagnosed with ocular melanoma in Huntersville, NC, and Auburn, AL, and people want to know what is going on. Ocular melanoma, aka "uveal melanoma," only affects around six in one million people in the United States, but at least 36 people who attended Auburn University between 1983 and 2001, and 18 people in Huntersville reportedly have been diagnosed since 2000, according to CBS News.

So, why is this in the news now? A few women who were friends at Auburn University connected on Facebook over their diagnoses, and then created a Facebook group to find other people who were affected. As the numbers grew, they suspected that it was more than a coincidence, and they wanted answers.

Here's what we do know about ocular melanoma: It's a type of cancer that develops in the melanin-producing cells of the eye. But, what we don't know is why there are so many cases happening so suddenly in the same pockets of the country. It sounds like an episode of House M.D., and even experts are stumped. "When this was first going on, there were people looking into the cause of it, the coincidence, and the geographic nature," says Brian Marr, MD, who runs a comprehensive clinic for ocular melanoma at NewYork-Presbyterian/Columbia University Medical Center. "Really, it's been kind of baffling and a little bit peculiar."

Researchers in Huntersville have been analyzing the air, water, and land to see if anything could be directly related to the cancer, but haven't been able to pinpoint anything, according to WCNC-TV. Additionally, a representative from Auburn says the university is working closely with the Alabama Department of Public Health to review the cases and get to the bottom of it. "Most vexing for those affected by this disease — and for us — is that the scientific community has not yet identified the potential cause, or causes, of uveal melanoma," the university's statement reads.

For now, this particular case is somewhat of a medical mystery, but researchers are desperately trying to find a cure or explanation. "It's important to send home the message that we're working our butts off to try to find something for this rare disease," Dr. Marr says. If you are suddenly concerned about ocular melanoma, ahead Dr. Marr answers a few questions you may have:

Depending on the size of the melanoma, most people note changes in their vision, like decreased or distorted vision, flashes of light, or floaters, Dr. Marr says. "But, if it's really small, it may be asymptomatic," he says. During a routine eye exam, your ophthalmologist can look in the back of your eye and diagnose ocular melanoma before you experience symptoms.

Typically, women in their mid 50s get ocular melanoma, although it can span all age groups, Dr. Marr says. Ocular melanoma is a very rare cancer, that affects about 6 million Americans, or 2,500 cases in the U.S. yearly. (For a point of comparison, an estimated 178,560 cases of skin melanoma will be diagnosed in the U.S. in 2018.)

The exact cause of ocular melanoma is unknown, but there's "definitely a genetic component," Dr. Marr says. Researchers have pinpointed five or six genetic mutations that cause the cancer to act like a cancer, and that cause the cancer to metastasize, he says.

"Until recently, we’ve always said there's really nothing [that] environmentally causes uveal melanoma," Dr. Marr says. That said, having a light eye color, being white, aging, and being exposed to UV light can be risk factors of ocular melanoma, according to the Mayo Clinic. Although nothing has been discovered yet, Dr. Marr says these cases have raised questions about whether or not environment plays a part. "When this happens, we really kind of scratch our heads and say, Well, this is way too much of a coincidence, is there something in the environment that were overlooking? We can’t find it yet."

If the melanoma is small enough, sometimes doctors can remove it or treat it with radiation. But if the tumor is big, and it can't be treated with conventional means, then doctors will have to remove the eye, Dr. Marr says. In about 50% of patients with ocular melanoma, the cancer metastasizes, so it's important to catch it early. "[Metastasis] happens to a big extent of the patients," he says.

"It's a rare cancer, thank God, and it's considered one of these orphan diseases that don't happen very often," Dr. Marr says. "The general chance is pretty remote that you're gonna get it." If you are worried, the best thing you can do is go to an ophthalmologist and get your eyes examined. "In general, if this sparks an interest in eye care, I wouldn't be opposed to it," he says.

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