IV. Primary Ocular Melanoma
At the end of the Primary Diagnosis and Treatment Survey, VISION participants are given the opportunity to provide additional information they think is important to share with patients and researchers to increase knowledge, advance research, and ensure the best care. The following comments were provided: “There was a general absence of support and complete information regarding the disease. Most of my decision process was a result of internet results.”
“I wish my surgeon had told me about the possibility of metastasis and also require scans in the future.”
“I would have liked to utilize support services. I don’t remember if they were offered as I was just focusing on getting through the initial surgery and dealing with the diagnosis.”
Dr. Marlana Orloff and patients attend the Eyes on Cure: Patient and Caregiver Symposium in North Carolina.
“The oncologist told me he could save my eye or my life. It was very frightening.”
Did the patient find the support services helpful?
“I had no symptoms on diagnosis. Had a head CT for a sinus surgery and they saw something in my eye. Had 20/20 vision in affected eye.” “Diagnosed during a routine eye exam by optometrist with immediate referral to a retina specialist. Retina specialist immediately referred to OO but the closest one was over 200 miles away. Had to wait three weeks to get in with little or no info except what is on internet.”
0%
NOT AT ALL
8%
A LITTLE BIT
25% 25%
SOMEWHAT
QUITE A BIT
42%
VERY MUCH
33
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