First Post

Me and my eyepatch. Maybe a permanent fixrure on my face??Today is August 13 2006. (Despite what the timestamp says! I’m just working through this thing.)

Not that I have a fear of triskaidekaphobia but it seems to be a fitting day for my first post to a website dedicated to a condition that is changing my life.

My name is Rob and I have been diagnosed with ocular melanoma.

I was diagnosed with ocular melanoma on July 4 2006. That was after 3 years and 3 months of a marked loss of vision in my left eye with no explanation from any of the doctors I had seen in the months following this change in vision (March 28 2003). My opthamologist found an unexplainable, unidentifiable growth behind my left eye. I should add that I am in Kamloops, BC, Canada and even though I have a great local doctor (one of the best in BC) he is not an oncologist so I am traveling every few months to Vancouver BC to be treated.

A hint for you: if you go and see a specialist referred by your opthamologist and he says “I don’t think it’s a freckle” find someone that has a definitive answer. Fast. Who knows how much of my vision may have been saved if this was caught 3 years ago.

I don’t expect many visitors to this little spot on the Internet. After all, about 7 people out of a million are diagnosed with this type of cancer every year. That means, in Canada, about 200 people will be told they have ocular melanoma this year. And the next year. And the next. Sadly, about half of these people will die from the melanoma because it won’t be detected or it will be detected to late.

And they won’t understand what to expect and their doctors will not be able to fully prepare them because they see this particular type of cancer so infrequently. So hey, you’re an odd duck… like me.

I will be sharing links, information and my own story as time progresses. After all, since you’ve read this far, we’re in this together so I look forward to you visiting regulary and sharing your comments with me.

Even if just to say “Hi” or “Hang in there!”.

I appreciate it, really.

PS. I’d like to thank my family doctor for inspiring me to create this website.

PPS. Get your eyes checked at least every two years, even if your vision is fine.

  1. I see your posts are from years ago, but I would like to know where you got the 1/3 of proton therapy patients end up losing the eye?

    Here is our story. Sister had retinal melanoma. Went to dr gragoudas at mass eye and ear. Had the proton therapy and it worked well. Cancer was
    killed. But she had excruciating pain in the eye. Continued for four months. Local eye doctor sent us back to mass eye and ear. Dr. Gragoudas was offended that we
    were asking for options to try to releive the pain. He stood up and yelled “how dare you question me, I have done 4000 of these
    surgeries and you dare to ask me for options” Asked if she could have the tantalum rings removed to see if that would releive the pain. He yelled that the only reason
    he would go back into surgery would be to remove her eye. “Call me when the pain is soo bad that she wants the eye taken out” I asked again about other options. He stood up again and said
    I won’t even discuss this any further, I will take the eye out and that is that and he stormed out of the room. Couldn’t believe he was such a
    pompous jerk. We weren’t confrontational, just wanted to know all the options available. Still don’t know how he could
    remove a perfectly good eye rather than try to exhaust every possible option first. Nope, the eye comes out or he would do nothing.

    We left and had a minute where we were able to talk with staff. They told us that he had taken out a man’s eye the week before because of eye pain. Horrified us to think that this
    man may have lost is eye due to the arrogance of a haughty doctor.

    Wondering how many other patients lose their eye when all options aren’t even considered first. We have no idea if the removal of the tantalum rings (surgically implanted to direct the proton radiation and usually
    left in the eye after radiation is finished) will aleviate the pain, but she is willing to take the chance before removing the eye. Dr in California said that it could be
    possible that the body is rejecting the rings and causing the pain. COuld also be the tumor shrinking and pulling on inside of the eye. But the only way to know is to remove the rings, so it seems that would be the first choice
    of any sane person.

    If removing the rings solves the problem would want to be able to let people know they don’t have to have the eye removed. Not sure how to find out how many people have had eye removed by pompous doctors. WOuld welcome any information you can provide.
    Would also like to know if anyone has had the rings removed and if so why. Not sure how to do that either.
    Look forward to any comments.

    Debbie

  2. Hi Debbie, The statement “1/3 of proton therapy patients end up losing the eye” was given to me by my cocular oncologist. There is no real time allotment and then enucleation is required. In many cases this is a step that never gets reached.

    But where there is eye pain and also new tumors can be found again in the same eye, which is what happened to me. A second tumor was found early in the year and proton radiation treatment a second time was declined by me. I recently has my eye removed.
    Options vary by region and many doctors do not have enough experience with specific eye cancers to offer realistic treatment options. Many doctors simply say it’s lose the eye or do nothing and hope the cancer doesn’t spread.
    Best wishes.