Passionate pirates for ocular melanoma: U of S student builds awareness of rare disease

By in News

When students read about cancer as a leading cause of death in Canada, they may first think about breast cancer, lung cancer and skin cancer. Ocular cancer, a much less common form of the disease, is likely far from their minds. One University of Saskatchewan student hopes to raise awareness about this rare disease.

Ocular Braclets
Carissa McGuin, her mother, her sister and her aunt hold ocular melanoma necklaces.

Ocular melanoma is a disease that involves the abnormal growth of cells in the eye that destroys nearby tissue. Ocular melanoma first develops in melanocytes, cells responsible for the colour of the eyes, and it can affect the eyeball, the conjunctiva, the eyelid and the eye socket. The disease can also spread to other body parts. According to its most recent statistics, the Canadian Cancer Society estimates that in 2012, 54 Canadians died from ocular melanoma.

Carissa McGuin, a second-year physiology and pharmacology student, addresses the challenge that a diagnosis of such an uncommon disease can present.

“Because [ocular melanoma] is so rare, I think it only affects six in a million people in a year. There is not a lot of information out there … It can be intimidating to be diagnosed with something and then not have any access to information,” McGuin said.

In 2010, 370 Canadians were diagnosed with ocular melanoma. There is currently no cure for ocular cancer, but only treatments such as surgery, radiation therapy and chemotherapy. On average, Canadians diagnosed with ocular cancer are 77 per cent as likely to live at least five years after their diagnosis as people in the general population.

McGuin tells the story of her mother, Cindy Gaetz, and her battle with ocular melanoma.

“My mom was diagnosed with ocular melanoma in the fall of 2013. It first started, I remember, on New Year’s Day of 2013. She experienced some flashing and shadows in her vision so we went and got her eye looked at,” McGuin said.

Because ocular melanoma is so uncommon, Gaetz could not receive a diagnosis or treatment in Saskatchewan. Instead, she traveled frequently to the Margaret Princess Cancer Centre in Toronto, one of two centres in Canada equipped to treat such a disease.

McGuin further explains the treatments that her mother underwent, including stereotactic radiation and brachytherapy.

“In 2015, she had to have her eye removed because they couldn’t control the growth of the tumour. So, for a year and a half, she had worn an eyepatch,” McGuin said. “Last April [2016], she passed away after participating in different clinical trials to treat metastatic ocular melanoma.”

McGuin was incredibly shocked and saddened by her mother’s passing and she believes that reliable resources will increase understanding of risks and treatments.

“I really thought that it was something that would be fairly easily treatable. I didn’t realize that there are not really treatment options for it, that it’s all experimental right now because there is no information. I had no idea that my mom was going to pass away,” McGuin said.

McGuin has represented Saskatchewan at the Miss Canada Petite in Toronto, and this July, she will represent Canada at the Miss Tourism Intercontinental in the Dominican Republic with an Ocular Melanoma Awareness platform. With her family, McGuin has organized various fundraisers for ocular melanoma research, raising over $10,700 for the Princess Margaret Cancer Centre. 

“We hold a pub crawl called Pirate Pub Crawl for a Cure. We did a Relay for Life team in 2014 and I think the name was Cindy’s Passionate Pirates for ocular melanoma. We always do a lot of pirates-themed things because of the eyepatch,” McGuin said.

She explains that May is Melanoma Awareness Month, of which one important day is dedicated to raising awareness about ocular melanoma: National Eyepatch Day for Ocular Melanoma.

To help McGuin’s cause, students can inform others and participate in fundraisers. McGuin assures those who share her experience that they are not alone.

“If anyone has family members who are going through something like that or going through something themselves, where they don’t really feel like they have a support group, know that there are so many people around that always willing to help out.”

Gabriel Siriany Linares

Photo: Carissa McGuin / Supplied