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Aug. 27, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

A Life Saving Reminder – Loren’s Rare Cancer Journey

Posted by Rohan Narayanan

In 2001, I was diagnosed with ocular melanoma. What makes ocular melanoma rare is that only 2,500 people are diagnosed with it each year. Following my diagnosis in October of 2001, I went through numerous tests at Sylvester Cancer Center. In November, I was admitted into the hospital where they implanted a metal plate into my left eye with 20 seeds of radiation, which was removed after a week.  

The doctor continued to see me every six months, and in 2009, they lasered the tumor and put a new lens into my eye. I see a medical oncologist twice a year, and I am given a CAT scan and MRI once a year to make sure the cancer has not metastasized. 

In 2017, I suffered an ocular stroke in my right eye, which is my good eye. Six months later, I started hemorrhaging at the macula, which is called radiation retinopathy. It is a side effect of radiation that took 16 years to occur. I now spend every two to three weeks at the ocular oncologist getting injections into both eyes to stop the hemorrhaging. 

These treatments for my rare cancer will continue indefinitely. I believe that each day is an opportunity to live a day in gratitude, and I am blessed for the vision that I have left. My passion and purpose in life is to spread awareness for ocular melanoma. I want to remind people to get comprehensive eye exams yearly, as it could save your life. 

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.