Choroidal Melanoma Survivors

I have a small coroidal melanoma, a six in a million cancer, diagnosed 9 years ago.  There are only 10 or 12 ocular oncologists nationwide familiar with this cancer.  Outside of these super-specialists, in most cities, a patient will be assigned to a top retinal specialist.  An opthalmologist will ordinarily see one choroidal melanoma every 10 years of his practice

I went to a top Park Avenue specialist who decreed it was cancer and I scheduled plaque treatment.  The other alternatives he offered me were enucleation or watching, but I was assured it would grow and I'd have a better outcome treating it now.

I also sought a second opinion from a second Park Avenue specialist (NY has two who treat this), and he opined that it wouldn't grow.  The first oncologist objected to my seeing this other NY practitioner because they often disagreed.  He offered to introduce me to a colleague in Miami for a second opinion.  I've since been with the second NY specialist, visiting two or three times a year.  My doctor is satisfied that my tumor is dormant and needn't yet be treated, and if I'm lucky, may never be treated.

I live in Atlanta and was introduced to another Atlantan who had coroidal melanoma and went to Wells.   (I had inquired about obtaining a third opinion from Wells, and was told they require a six-hour physical exam as part of obtaining an opinion.  Forget it.)  At his initial meeting with the Wells ocular oncologist, a reknown specialist on choroidal melanoma, she told him, "We're not here to save your vision.  We're here to save your life."  She scared him and he immediately underwent plaque therapy with the resulting loss of vision in the treated eye.  His tumor was about the same size as mine!

Suffice to say that one can get good outcomes by treating conditions that don't require treatment.  I have letters from both doctors, one saying it's cancer and will grow, the other saying it's a suspicious nevus which may never grow.  The tumor had grown slightly a little over three years ago, but stopped.

A few comments regarding what people have written above.  Avastin, I'm told is of little use.  It's very expensive and if it has any effect, it only delays the onset of macular degeneration from plaque therapy for two or three months.  Fluorescein angiogram, used to prove a cancerous nevus, is a useless procedure for small choroidal melanoma, and is probably unnecessary for a large CM.  There's a new study which says that choroidal melanoma that has drusen will never metastasize, but there will probably be found an exception to this rule in the future.  My melanoma has drusen.

The COMS trial which proved that plaque therapy and enucleation had the same 5-year survival rate was flawed.  There was no control group.  It didn't study patients who underwent watching until tumor growth was documented.  Why do some patients succumb when treated with plaque or enucleation and others survive with no treatment?  There's a theory that the cancer escapes very early in the course of the disease, while in others with a less aggressive cancer, it does not.

Memorial Sloan-Kettering has for over a decade been working to develop a pill to treat choroidal melanoma, which is currently in a closed trial.  The results won't be known for another few years, and it may take longer before it's successful or approved.  If successful, it will spare vision, not merely the eyeball as with vision-destroying plaque.  Keep hoping because new treatments may be on the horizon.  I'm amazed at the improved methods of measuring and documenting my eyeball over the past 9 years.

If you elect to watch the tumor until growth is documented, be sure to always wear UV protection for your eyes and a brimmed hat.  Polycarbonate sunglasses.  Don't rely on UV coated prescription eyeglasses.  After the one time my melanoma grew, I had my six-month old eyeglasses tested, and they didn't have the UV coating that I had ordered.  The only other suspicious activity I did during that six months between visits was sat in a room with my claustrophobic wife as she underwent an MRI scan.  So, I won't do an MRI now, though I'm assured this probably had nothing to do with the growth.  And I wear polycarbonate glasses (clear or dark) over my UV-coated prescription glasses whenever I'm outdoors, even for a moment.

Hi everyone, 

   My boyfriend, who is 27 years old, just had the plaque removed last week. So far he is experiencing double vision, inflammation in the eye, and some slight swelling that doesn't allow his eye to open all the way. Has anyone experienced the similar effects? If so, how long does it take to go away or lessen? His Doctor says he's doing fine but we want to hear from other patients who have undergone Brachytherapy. 

KTeacher said:

Lost eye

this is not an active group.  I lost my eye to cancer recurrence.  The site lost eye has been very supportive and helpful to me.

Is the website titled Lost Eye.com?  Also do they have current Melanoma eye survivors on it?

Thank you.