About ocular melanoma
More information on ocular melanoma can be found at http://www.ocularmelanoma.org/.
By BRIAN WALKER
COEUR d'ALENE — Katie Wilson's nickname is "Honey Badger."
Because she's a fighter.
Two years ago, doctors diagnosed the 43-year-old wife and mother of two with ocular melanoma.
"I was watching TV and saw white flashes of light come across my field of vision," said Wilson, recalling her first symptom. "In my peripheral vision, I saw what appeared like a spinning ceiling fan."
In about 80 percent of patients with the Class B type of the rare form of cancer — the kind Wilson has — the disease spreads to the liver. The prognosis is grim. In all cases of the cancer spreading to the liver, death has resulted. Typically very quickly.
"Through genetic testing, I found out that I have Class B, which is the very aggressive form," said Wilson, a North Idaho College psychology instructor and a former mental-health therapist. "I've lost nearly all of the vision in my right eye, but I'm grateful that I still have it."
"Although I am currently cancer-free, the chances of me surviving for the next five years is pretty slim, as this is a cancer that lies dormant in your blood and spreads directly to your liver, lungs or brain. There is currently no cure, and we don't know how it starts."
Rather than being depressed about the devastating diagnosis, she said she felt an obligation to speak out about the cancer, which strikes only about five people in a million each year.
"Get your eyes checked yearly," she said. "Having your eyes dilated can catch the condition."
Wilson's sister, Elaina Matthews, said she’s been amazed at Wilson's strength during the ordeal.
"She has taken this diagnosis and hasn't complained or asked, 'Why me?'" Matthews said. "I don't know if you could have much worse of a diagnosis because this is always in the back of your head. She's the strongest person I know, and she's determined to live her life the best she can."
Just two weeks after Wilson was diagnosed, she dressed up for Halloween as Black Mamba from the movie "Kill Bill" — complete with an eye patch.
That typifies how Wilson makes the best of her situation, Matthews said.
Wilson said she jokes with her NIC students when she accidentally bumps into things.
"I tell them that I'm coming to class clumsy drunk," she said. "Laughter is definitely a coping mechanism."
Wilson said removing the eye doesn’t remove the cancer. It doesn’t even minimize the chance of it spreading because ocular melanoma resides in the bloodstream as well.
"When the tumor forms in the eye initially, microscopic cancer cells that are undetectable by scans escape the eye and travel through the bloodstream," she said. "What makes this cancer so insidious is that even though the initial eye tumor is usually successfully treated, 80 percent of the (Class B) cases end up with metastatic disease. Because of this, this is a cancer that is never in remission."
Wilson said she and her support group hope people will consider donating to the Ocular Melanoma Foundation, via ocularmelanoma.org, to help fund research that will bring about a cure.
"There is currently very little money for ocular melanoma research because it is so rare and very few people have heard of it," she said. "We are kind of the red-headed orphan children of the cancer community. I am hoping to live long enough to know a cure, and the only way we'll find a cure is funding research."
Wilson said there are few clinical trials of potential treatments being conducted, but one is showing promise.
She said ocular melanoma used to be more commonly associated with elderly males, but there's been a heightened trend in its incidence in younger women. No causes, including sun exposure or strain, have been linked to the cancer.
Wilson said her eye doctor sent her to see a specialist when it was discovered she had a detached retina. She said it wasn't until she saw a second specialist that she was diagnosed with ocular melanoma.
"I was shocked, to say the least, and even more devastated when I found out that I have Class B," she said. "I thought I just had a detached retina and was going to have a simple procedure. It is believed that I had my tumor for about a year and a half before the diagnosis."
Wilson said removing the eye treats the initial tumor, but radiation, which she had performed on her right eye at Oregon Health Sciences University in Portland, has proven to be just as successful in treating the primary tumor location. If the tumor is large, the only option is to remove the eye.
"Twenty years ago, removing the eyeball was the only treatment option," she said.
Wilson will have checkups at OHSU every six months for the rest of her life.
"The radiation has seemed to work, and the tumor has shrunk," she said.
But she knows there always could be the alternative update.
"Every six months what I live with is, 'Is this going to be the scan that they tell me I am going to die?'" Wilson said.
Wilson said it would be easy to feel hopeless about her condition. With the support of friends and family, including husband Phil, their 14-year-old son and 8-year-old daughter, she's become an advocate for awareness.
"Your attitude has so much to do with your prognosis," she said.
For a doctoral program she's applied for, she wants her thesis to be about people who have experienced medical trauma and what they can do to continue to thrive. She also wants to be available to help others who have aggressive cancers.
"You can either live life the best you can and appreciate every moment you have — or give up," she said.