Advocacy groups helped one patient with ocular melanoma — and many others — learn more about their disease and treatment, as well as a place to connect about their experiences.
When a patient is diagnosed with a rare cancer like ocular melanoma, it may be easy to feel alone throughout the journey, but advocacy groups can provide the community one needs to obtain both support and pertinent information.
Although ocular melanoma is the most common primary cancer of the eye, it is a rare form of cancer that is diagnosed in approximately 2,500 people in the U.S. per year, according to the National Organization for Rare Disorders.
Despite the rarity of ocular melanoma, advocacy groups like A Cure in Sight and CURE Ocular Melanoma allow people like Ashley McCrary, a 52-year-old patient with uvular ocular melanoma from Auburn, Alabama, to learn more about their disease and connect with other patients. In fact, McCrary is paying it forward by doing her own advocacy work with A Cure in Sight.
“I'm very humbled and appreciate the opportunity to be able to do this because I firmly believe that’s part of why I'm going through this, is to hopefully educate other people or help in some way, that this isn't all in vain,” said McCrary in an interview with CURE®.
McCrary’s cancer journey began in 2012 when she was 42 years old. At that time, she was working as a full-time speech therapist at a hospital, when she presented with what she described as “very, very mild, very few symptoms,” mainly intermittent blurry vision that she then attributed to her age. It wasn’t until she went to the beach when one of her friends noticed a black spot on her iris.
“I’m one of those people who it is very unusual for this to happen, but the tumor that was growing in my eye had actually grown forward, and you could see it in my iris,” said McCrary. “I can remember (going to) look in the mirror, and I see this massive black spot that she’s talking about.”
A month after the beach trip, McCrary and her husband, who was a director of an oncology group in Memphis, were invited to a dinner party at a doctor’s home, during which someone else pointed out the black spot in her iris and said that she needed to get it checked out immediately.
This led McCrary down a path of seeing several specialists before receiving her diagnosis. What was originally believed to be an iris melanoma turned into a diagnosis of uvular ocular melanoma.
“I’m not one who uses foul language a lot, but (the ocular oncologist) said, ‘I’ve got some really s----y news for you,’” she said. “’This … is a really bad, aggressive type of cancer called uvular ocular melanoma, and I think your best course of treatment is to have your eye removed.’ It took him 15 seconds to tell me everything. It was a shock-and-awe kind of a moment.”
McCrary underwent enucleation, or the surgical procedure of removing the entire eyeball, in August 2012. Further diagnostic testing of the eye determined that she had class 2 (high probability that cancer would recur) ciliary body melanoma, which is a rare subtype of ocular melanoma. She also learned that her tumor, given where it was located in her body, had a high percentage of metastasis. Because of this, her cancer team monitored her for potential metastasis and recurrence for years after her eye removal.
In 2020, after McCrary underwent imaging as part of surveillance, her oncologist called her to come in with her husband, Dave. McCrary expected to have one or two tumors, which was something she was familiar with since she also had friends with ocular melanoma. Instead, there were over 100 tumors in her liver, eight of which were measurable.
McCrary was quickly placed on a tumor board meeting days after, which led to her going to Philadelphia — Thomas Jefferson University, to be exact — to undergo immunoembolization, a liver-directed treatment that was “perfected,” McCrary said, at that institution. Unfortunately, after eight months of immunoembolization, it was determined that the treatment stopped working. Immunoembolization is a procedure where providers inject drugs to stimulate immune responses directly into the arteries that supply the liver, combined with embolization of the hepatic artery. According to the National Cancer Institute, embolization is a procedure that uses tiny gelatin sponges or beads to block a blood vessel in an attempt to block the flow of blood to a tumor.
Of note, McCrary underwent genetic testing before starting immunoembolization, which determined that she was HLA positive and had the PRAME antigen on her tumors. This, among other factors, allowed her to qualify for the PRAME trial, for which she receives treatment at Thomas Jefferson Hospital.
Opening the Door to More Information
When McCrary was diagnosed, she didn’t have an advocacy group to turn to, but rather a group of friends with the same cancer type.
“When I was first diagnosed, I had two friends that I was able to reach out to,” McCrary said. “Nothing was given to me in pamphlet form. … I had two friends that I was able to call and say, ‘OK, what did y’all do? Who did y’all see? What should I expect? And these two women … walked me through this process.”
McCrary had a unique experience with advocacy groups since the one she works with the most — A Cure in Sight — actually came to her. In particular, A Cure in Sight learned about McCreary through a story on “Good Morning America” about a potential cancer cluster — or a greater than expected number of patients with cancer within a geographical area, according to the Centers for Disease Control and Prevention — where McCrary went to college.
A Cure in Sight and CURE Ocular Melanoma are organizations that provide support services to patients with ocular melanoma, in addition to increasing awareness and research funding. McCrary noted how “well done” their weekly support groups are, which are available for both patients with metastatic and nonmetastatic disease.
“The amount of information that both groups (provide) — and remember, … nothing was given to me (in the beginning),” McCrary said. “There was no pamphlet, there was no nothing. But they provide so much education, both groups. They both have a registry … where people can actually go on and on their own volition being able to put in the information just helps researchers.”
For example, support groups through A Cure in Sight provide patients with different perspectives from patients on various treatments and different stages of their disease. Groups through CURE Ocular Melanoma will focus on different topics each time including the financial, emotional and caregiver side of the story, among others.
McCrary noted that both groups also provide free education not only to patients, but to families and even doctors in the area in an attempt to raise awareness.
McCrary advised patients with ocular melanoma to educate themselves well and learn how to become their own advocate.
“There are people that I will meet that their doctors don’t know how to treat (ocular melanoma) where they are,” she said. “So they’re treating it like you would treat skin melanoma, and they are very different. Medications that work for skin melanoma don’t work for ocular melanoma, and that’s unfortunate.”
She added that advocacy groups provide valuable information about a person’s disease compared with trusting websites that may not have accurate advice. Advocacy groups can also inform patients on where they can go for treatment near where they live, financial resources and potentially how to get into certain cancer centers to undergo a specific treatment.
“There's so many things out there,” McCrary said. “You don't know what you don't know. And yet, it's foolish for you not to look into things because there's people out there who've done the legwork for you. … Every cancer — I would think — has an advocacy group. It's just a matter of finding it.”
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