Rachel

Oh, I didn’t talk about the surgery–I actually disliked the idea of two surgeries (double the chance for things to go wrong!)–which did help my decision to do the proton therapy–and also, for me, the idea of being ‘radioactive’ for a week was not too exciting. The surgery (and recovery) to put the ‘clips’ on the eye around the tumor was not too difficult.

Hello! I chose Proton Therapy–in hindsight I should have done the research you are doing…so good job! Although, I guess everyone’s experience will be somewhat unique. I will share mine. In terms of moving your eye during proton therapy, the caregivers I had made me comfortable with that–they are watching your eye through cameras the whole time, and can stop the beam instantly–at least that was my understanding. The one downside I have experienced, is the location of the tumor dictates the angle they ‘come in’ with the beam–which in my case, caused some annoying damage to my eyelid. I am a year and a half out from treatment and the eyelid skin still flakes and peals and is red with scar tissue. In terms of the success, all my follow-ups have shown the choroidal tumor to be ‘inactive’–not growing anymore. It doesn’t actually ever ‘go away’, it will always show up in my scans as a mass–I guess dead cells at this point? If my tumor had been bigger, I would have done more research on having my eye taken out and gotten a prosthetic. Hope this was helpful.