First Post

Me and my eyepatch. Maybe a permanent fixrure on my face??Today is August 13 2006.

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. Hi Rob,

    So sorry you are going through this. Our son in law has been fighting this beast for about 4 years. His ocular melanoma spread after the first year. Our daughter, his wife, Sara Selig, is a physician and has done some pioneering work in the field by identifying and bringing together most of the major scientists from around the world to discuss research and how to create more collaboration toward finding a cure. She will be joining the Melanomna Research Foundation to help them begin a new focus on Ocular melanomona. Anybody wanting to get involved to help the “cause” or help support research can contact the MRA and indicate interest in OM. Please let me know if I or my family can ever be of help to you. best, Andy Selig

  2. Hi Rob,
    I live in Northern Saskatchewan and was diagnosed with OM 4 years ago, one week after my youngest child was born. I travel to Toronto every year for annual check ups after having plaque therapy there in January 2008. I also travel to Saskatoon every 6 months for checkups. I have now lost almost all of my vision in my left eye. I read these stories and I still cannot believe what I have gone through over the last 4 years. So, “hi” and “hang in there” and I wish you all the best. Claire Parker

  3. Hi Rob,
    I wish you the best of luck. My mom was diagnosed with OM three years ago and also had to have her eye removed due to the size of the tumor. Two years later the cancer returned throughout her body, there were no symptoms until she was at stage IV with multiple tumors. I’m assuming you both had the same doctor at the Vancouver Eye Cancer Centre. Her doctor was very confident there had been no leakage and that all the cancer had been removed. She did not want to put my mom through scans as follow up due to radiation and said she would see her every six months and judge how she seemed. Being melanoma does not present symptoms until it is too late I urge you to get follow up scans, insist on them. It is not worth the risk. We are now one year since the cancer returned and my mom has gone through one round of Ipilimumab which may or may not have run its course so we are looking at two hopeful other new treatments. One may include a new trial for ocular melanoma patients by Dr. Smiley out of Edmonton (best in Canada for melanoma patients). I also recommend checking out the Save Your Skin Foundation, they have been very helpful in information and resources. Best of luck to you 🙂

  4. Thank you very much for the info. I have just arrived in vancouver for two days of having my prosthetic made and fitted.
    I will add the concerns you shared to the growing list. You and your mother are in my prayers.
    Cheers!

  5. Hello Rob,

    My name is Darci and I work for Inland Eye Specialists. We are an Ophthalmology and Optometry practice is Southern California. I have put together a team this year for the Relay For Life Cancer walk. In having a team at this event I will need to pick a cancer and have information on that cancer posted in our booth. Being an Ophthalmology practice I have chosen to do Ocular Melanoma. As I have read in your stories and in other research, this is a very unseen cancer and I would love to help people learn more about it. My reason for writing is in hopes to get your permission to use your story in my booth at the event. I am very happy to see how far and well you have come. Your eye looks great! We now have a doctor here at our practice that makes and fits for prosthetic eyes. Hope all is well and I am so excited that you will be celebrating more Birthdays!

  6. Hello Darci,
    Yes, you have my permission to reproduce my story from this website within the method you have described. I hope many more people will not have to live through this because of an increased awareness. Feel free to email me directly at any time.