July 17, 2012Ocular Melanoma?  What’s that?That’s a question I hear a lot—most people (including many health professionals) think of skin cancer when they hear the word “melanoma.”  In fact, if skin melanoma is diagnosed early and treated properly, most with the disease will survive for a long time (think of John McCain).

Not so with ocular melanoma, in which the malignancy grows inside the eye.  It’s difficult to diagnose because the symptoms, which may take a long time to be evident, can be confusing when they finally appear.  Opticians and optometrists don’t have the equipment for diagnosis—that can only be done by an ophthalmologist or a retina-vitreous specialist with ultra-sound.  And—unlike melanoma of the skin—ocular melanoma metastasizes very quickly, sometimes even before the symptoms show up and the diagnosis is made.  It especially loves livers, lungs, and brains, but sometimes shows up in other organs and in bones as well.

I was diagnosed with ocular melanoma in my right eye in late 2008, and treated with radiation at Memorial Sloan-Kettering in New York City in January 2009.  I have had annual abdominal MRI exams and regular follow-ups with my ocular oncologist ever since.  Three years after the initial diagnosis, an MRI revealed a lesion in my liver.  My ocular oncologist put me in touch with a liver specialist at Sloan, who I have been seeing regularly.  Unfortunately, the first CT scan at Sloan of my chest, abdomen, and pelvis turned up two lesions in my liver as well as a lot of what are termed “pepper flakes” (small lesions scattered throughout the liver).  A needle biopsy revealed that it was metastatic ocular melanoma.  I had four infusions of Yervoy (a chemo agent) from December 2011 through May 2012; and the last CT scan on June 28 showed that the tumors have shrunk.  My next CT scan is scheduled for early August and we’ll see where we are and where we go from there.  There are other treatments available and I may wind up in clinical trials.

A recent article on ocular melanoma made the front page of the New York Times this month, and you can read it at http://www.nytimes.com/2012/07/10/health/genetic-test-changes-game-in-cancer-prognosis.html?_r=1&nl=todaysheadlines&emc=edit_th_20120710.  There are a lot of flaws in the article, and I recommend you read the comments if you can.  Many of them are from knowledgeable medical practitioners and ocular melanoma survivors, and most point out the shortcomings of the article—but all contain useful information.

Interestingly, shortly after my initial treatment at Sloan in early 2009, I wrote a poem titled “Bitter/Sweet,” which you can find elsewhere on this blog.  A number of health professionals with whom I shared it after my liver mets were diagnosed have asked, “How did you know?”  The best answer I could give was, “I don’t know how I knew, but I knew.”  In recent months, since the diagnosis, I have learned a great deal—through email lists and attendance at conferences with medical specialists, patients, and caregivers.  One of the most important things I have learned is that ocular melanoma is a vicious beast which is difficult to diagnose, deadly,  and metastasizes quickly—and that while there is no absolute cure, there are treatments available to at least prolong life, contrary to the doom-and-gloom in the New York Times article.

My advice:  if you start seeing flashing lights or an unusual number of black floaters, get thee to an ophthalmologist quickly!  Early diagnosis and treatment is possible, and there are many long-term survivors.  I hope to be one of them!

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