Researchers investigate three cases of rare cancer among former Auburn University students
Most patients diagnosed with uveal melanoma, a rare eye cancer, have never even heard of the disease.
But Allyson Allred, then 31 and living in Hoover, had some idea what she was facing when doctors made the diagnosis back in 2001.
Through her church, Allred had prayed for a Vestavia Hills woman struck with the same cancer one year earlier – an acquaintance who also lived in Auburn University dorms during freshman and sophomore year. Allred reached out to the woman and they quickly became friends.
Their unofficial cancer sorority grew by one more 11 years later, when another classmate from the same set of neighboring dorms came down with the rare condition. Soon after, researchers began taking notice.
Every year, doctors diagnose about 2,500 cases of uveal melanoma – which means that roughly six out of every one million people will develop the disease. Most patients develop tumors later in life, but all three Auburn cases occurred in younger women who attended the school from 1988 to 1993 and lived in two adjacent dorms.
Researchers from Thomas Jefferson University Hospital in Philadelphia are currently investigating all three cases along with five others linked to young women Huntersville, N.C. They hope the unusual groups of rare cancer patients will reveal common risk factors and a possible cure for the disease.
Unlike skin melanoma, which can be caused by exposure to ultraviolet radiation from sunlight and tanning beds, doctors don’t know what causes uveal melanoma. The disease often starts as a freckle in the eye that grows, crowding out the color in the iris.
“This is a rare disease for which there isn’t an exact known cause,” said Dr. Marlana Orloff, oncologist at Thomas Jefferson University Hospital. “No one’s really uncovered anything that causes it yet.”
For Allred, the diagnosis came as a shock. The former kindergarten teacher and stay-at-home mom began seeing mild flashes of light – a common sign of a detached retina. Doctors found a tumor had pushed the retina away from connective tissue, causing the detachment. The tumor had grown to 10 centimeters, so doctors removed her eye to treat the cancer.
The friendship between all three women has become one of the unexpected bright spots of the disease, Allred said. Recently, they reached out to other former students on Facebook, seeking out others who may have been diagnosed for participation in the Thomas Jefferson study. They have received some responses, but so far, researchers have not confirmed any new uveal melanoma cases.
Half of patients with uveal melanoma will suffer a recurrence of the disease in another organ, so Allred’s doctors scanned her once every six months to check her body for tumors. She remained cancer free for seven years, until a spot appeared on her liver.
Doctors removed that tumor and another that cropped up a couple of years later. Finally, the disease spread throughout her liver, and doctors could no longer treat it with surgery. Fortunately, the cancer has responded to new immunotherapy drugs – and every time tumors flare, Allred receives an infusion in Philadelphia. Mild flu-like symptoms often follow the treatment, but otherwise Allred tolerates the therapy well.
The drugs have been much more effective against her cancer than predicted, Allred said.
“My doctors say I’m in the top one percent for this drug,” she said. “Prayers have been a huge part of my story.”
Neither of the two other women has suffered a recurrence of the cancer, Allred said. There is urgency to the research, since uveal melanoma can’t be treated by chemotherapy and metastatic disease almost always turns fatal.
“If you can figure out a cause, you can often find a cure,” Allred said.
Orloff said the cases in Auburn and North Carolina can’t technically be called cancer clusters, but they are unusual concentrations of a very rare disease, and warrant additional investigation. Sometimes researchers can pinpoint the cause of cancers that occur in groups, which can be linked to contaminants, but other clusters happen by chance.
The shadow of cancer has followed Allred for more than 15 years, but she has survived in good health long enough to see both of her children off to college. Her daughter will follow in her mother’s footsteps by attending Auburn University. She hopes that by sharing her story, she can educate people about the disease and help researchers find a cure or a strategy for prevention.
“I’ve had people tell me there’s no such thing as melanoma in the eye,” Allred said. “And I have to tell them, ‘Well actually, yes there is.'”
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Published at Sun, 05 Mar 2017 14:21:12 +0000