My name is Robert Lee, and I have Ocular Melanoma.
I am not a specialist, just a survivor of this very rare cancer. On this day I have completed the last of four proton radiation treatments at the TRIUMF Research Facility in Vancouver, BC, Canada.
During my first follow-up appointment (today) with my ocular oncology ophthalmologist Dr. Paton, she suggested a website that will allow other Ocular Melanoma patients to find information concerning this specific type of cancer and this is what I am attempting to do here. Dr. Paton will be providing me with information concerning diagnosis, treatment and other relevant information to help other Canadian patients dealing with this disease, themselves and their families, to better understand OM throughout the coming months (years), to help to find the information they need that is relevant to Canadian patients, their families and concerned individuals.
Please note that the information available here is NOT a substitute for professional advice and should be used for reference only. Please see your specialist!
My first change in vision was March 28 2003. Like a light switch being turned on the vision in my left eye became blurry. As soon as possible I went to see my regular eye doctor. At the time I already wore glasses for poor vision in my left eye. A couple years earlier I was told by my optometrist that I have a differently shaped left eye that was causing me to have trouble seeing and was causing my headaches, the complaint at the time. He prescribed eye glasses which improved my vision and ended the headaches.
At this time he saw something behind my see and immediately referred me to an ophthalmologist to further investigate this change.
In the course of treatment I have had PDT treatments (Visudyne) and Avastin treatments (both described elsewhere in this website). The final treatment at the time of this writing was Proton Radiation treatments.
I was initially diagnosed with having a type of Age-related Macular Degeneration (AMD). Surprising since I was just over 40 but who am I to say?
Regular specialist follow-ups determined that the profile of the growth was actually a tumor, a much rarer form of cancer, Ocular Melanoma.
The treatments I have had are documented elsewhere in this website.
Things to look for:
Any change in your vision should be investigated by the proper specialist.
If no immediate determination can be made as to what is happening to your eye/vision be sure to have regular follow-up appointments scheduled. The eye is still very much a mystery and OM is not something that biopsies are performed for. You should have eye tests, images and pictures taken regularly, every 3 months, six months or annually as your specialist deems necessary. Ultrasounds. Maybe even Angiograms to help your ophthalmologist determine the right course of diagnosis and treatment. The rareness of this type of cancer (7.5 people out of one million is the common estimate for how many people will be diagnosed with this type of cancer annually), leads it to not be readily identified. In Canada more people will win second prize in major lotteries than be diagnosed with OM annually.
Often there is no outward sign of this type of tumor other than the patient experiencing a sudden change in vision. Or any type of eye tumor, for that matter.
Again: If your vision suddenly changes get your eyes looked at by a specialist.