AUBURN, Ala. (WKRG) - Four women from Alabama who are battling the same rare cancer are making national news headlines.
The group is trying to spread the word about the need for the state to fund a study to investigate the occurrence of a rare cancer in people with ties to Auburn University.
Ocular melanoma typically affects 6 in every one million people, and it can be an extremely aggressive cancer.
The five-year survival rate is 80 percent if the cancer has not metastasized or occurred in other parts of the body.
Once ocular melanoma is detected outside of the eye, five-year survival rates drop to 15 percent.
Because there is no known cause or cure, it’s a race against time for those living with this disease.
That race is why Allyson Allred is a woman on a mission ever since doctors found a quarter-sized melanoma behind her eye 17 years ago. She told CBS42 News why she's counting on the state funding research to investigate why she and at least three of her friends who went to Auburn University at the same time have this same rare cancer: uveal or ocular melanoma.
"Well it's really important for us to have the money for the research, and without the research, there is not a way for us to find the cause of the possible link," Allred said. "And if they do find the cause or link that will prevent people from getting ocular melanoma."
CBS 42 News first reported the rare occurrences of this rare cancer in February. We travelled to Philadelphia to meet with oncologists Dr. Marlana Orloff and Dr. Takami Sato who are treating women who attended Auburn University in the late 1980’s to early 90's.
Among those being treated is Lori Lee, who explained her concerns with the way the cancer diagnoses was being treated.
"What I want to see happen right now is for all of this work that they are putting into this to be able to come up with a reason that we are getting this," Lee said. "How this [cancer] is just arbitrarily choosing various people and it seems like mostly females for whatever reason. And for them to be able to come to some fruition with their research and studies and to be able to help find some more specific treatments that will help all of us and to be able to find more people that could be in that group and get them the help that they need."
The following month, CBS 42 News brought you live coverage of a packed community meeting in Auburn where the team from Philadelphia presented their research to the public and answered their questions about this rare disease that some people said they too were diagnosed with.
For the first time, interested parties heard from Auburn University in a public setting about how they planned to respond to the accumulation of ocular melanoma patients with ties to their college. Since that meeting, not much has happened, especially for those racing against the clock to get answers in what can be a very aggressive cancer.
Researchers have found a similar occurrence of cases in Huntersville,NC, though a study there could not determine an exact cause for the sudden appearance of cases.
Dr. John Mason, an ophthalmologist at UAB, is a member of a task force established after that uveal melanoma public meeting in Auburn.
"It's a joint effort between geospatial specialists, epidemiologists and the Alabama Department of Public Health," Mason said. "And we have to have funding in order to look at environmental factors as well as genetic factors in these individuals."
Typically, to do a study of that magnitude would take between 100,000 to 150,000, according to Mason. Allred believes that educating the people about the disease may lead to the funding that is needed.
"It's real important that people see the severity of the disease, to have OM is one thing, to have your eye removed is one thing, to have recurrences nine times, surgeries, retreatments, several of us are on trials, radiation, have it multiple places in our bodies," Allred said. "We would be real grateful, real thankful to have the research to take place so we can prevent this from continuing to happen, and to find a cure."
Mason believes that the study is a matter of life or death for his patients.
"In 22 years of my practice, over half my patients with melanoma in the eye have died," Mason said. "If we can find an environmental cause of melanoma, we can prevent melanoma and save our people in the state of Alabama from dying."
The ADPH has issued a statement in the case which can be read below:
"At this time, the report of uveal cancer in Auburn is not a traditional cancer cluster. The Alabama Department of Public Health is not conducting an investigation but is reviewing cases and is serving in an advisory role to Auburn in this matter. ADPH has met with Dr. Orloff's group as well as with Auburn officials, and we are doing what we can to provide assistance. We are in contact with one of the cancer survivors who has provided us with a list of cases for us to verify. ADPH will verify the cases and will continue to collaborate with Auburn University and Dr. Orloff's research group going forward."
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