My Eye Cancer Story
In September 2008, I had a slight bump on my left eyeball on the outside side of the iris. I wore contact lenses and noticed the bump came and went but made my eye red. In the end, it turned out the bump was conjunctival melanoma, a rare eye cancer. It turns out this cancer is only ~5% of all eye cancers and eye cancers are a small percentage of all cancers.
I started a blog about my experiences with this because there was so little on the internet, other than very technical information. However, in August 2026, the website quit working and I haven’t had any luck finding the posts to rebuild it completely. Since first building this site in 2008, it has gotten anywhere from 1,500 to 4,000 hits every month. Knowing how tough it can be to find information on this cancer and how many people seem to be looking for information is really the only reason I decided to keep it active and am writing this… but without the level of detail I originally provided.
Brief Highlights
September 2008 … At the end of September, I went in search of an ophthalmologist who could help me. I was lucky because the doctor I chose actually had a single experience 20 years before with this. He said it looked like there was a small freckle within the bump. A biopsy is a waste of time because they still have to operate for the biopsy so he chose to operate as if it was definitely cancer.
October 2008… I had surgery on my eye in early October and, ultimately, it was definitely cancer but there were no clear margins (meaning not all the cancerous were removed). This meant I’d need another operation. Meanwhile, I was scheduled for a lot of tests to ensure it was only in my eye. So CT scan, MRI, PET scan, even a pap. Fortunately, everywhere else was clear.
November 2008… My doctor consulted with the Wills Institute in Philadelphia PA because they specialize in eye cancers and they said he’d have to operate again. I had the 2nd surgery on the Monday before Thanksgiving. He had to cut out more of the white of my eye. After the first surgery, he had put a couple of stitches in my eye but it caused my eyelid to swell so much, he left them off this time and the recovery was easier. The margins were clear after this surgery so he got all the cancer. Whew.
December 2008 and forward… I had to go in for exams every week, then every 2 weeks for months, etc. After 6 months, he reluctantly agreed I could wear eye makeup again. The monthly visits kept going for a long time. It was probably at least 2 years after the surgeries before I dropped to semi-annual visits. Since then, I’ve tried to have it checked annually but my doctor died suddenly at about the 2-year mark and no one I’ve seen since then actually has any experience with this cancer. However, they all seem excited to have a patient who has had it. Sigh.
Final Notes
I was told there were too few known cases to understand what might cause this type of cancer. The best the doctors ever came up with was the fact that I was blonde and had pale eyes (green), which made me susceptible. I was also told there was a chance of it coming back but the more time that passed, the less likelihood of a reoccurrence.
It’s now been 18 years since my surgeries. No reoccurrence. No obvious issues resulting from it or the surgeries. It’s very hard to find a doctor with any experience with eye cancer but it’s worth trying. If you’re reading this because you’ve been diagnosed with conjunctival melanoma, I hope you’re as lucky as I was! Take care!