How did you find out you had an ocular melanoma?
In the summer of 2022, I noticed that my vision in my left eye was getting worse when I read, so I went to the optometrist. He thought I might have cataracts and advised me to see an ophthalmologist. The ophthalmologist in Eindhoven didn’t find a cataract, but he did see a small mole on my choroid that he found suspicious. He immediately referred me to the LUMC in Leiden. In his referral letter, which was available on my patient portal, I read that he suspected an ocular melanoma. I immediately started Googling, and during the two weeks I had to wait for the consultation in Leiden, I learned a little more every day. When, after a morning of examinations at the LUMC, I was diagnosed with ocular melanoma, it didn’t really come as a surprise to me anymore, which allowed me to stay calm. I knew what ocular melanoma entailed and what the various treatment options were. The treatment plan was discussed immediately after the diagnosis, and treatment began within two weeks.
What treatment did you receive?
Since my ocular melanoma was fortunately very small, it was treated with radiation using a ruthenium shield. Under anesthesia, the shield—which is about the size of a 20-cent coin—was placed on my eye, and the melanoma was irradiated for a day and a half. I stayed at the LUMC the entire time. Even during the treatment, I was told that the radiation would cause my vision in that eye to deteriorate, because the ocular melanoma was located very close to the macula (yellow spot). The macula is the part of the retina that allows you to see clearly and in detail. They didn’t know exactly how much vision I would lose. They said this process could take up to two years after treatment. That turned out to be true; in the two years that followed, I saw the vision in my left eye slowly deteriorate.
How are you doing now? How did you come to be involved with the Melanoma Foundation? Why do you want to share your experience?
The radiation treatment completely eliminated the ocular melanoma, but it did damage the macula in my eye. My vision in my left eye is now less than 1%, so I can see virtually nothing with that eye. The deterioration happened very gradually, so I was able to get used to it. And fortunately, my right eye is completely fine. I do have less depth perception now. That can be tricky sometimes in traffic, when I’m pouring a drink, or when I take something that’s handed to me. But that’s about it. As soon as I heard that I probably had ocular melanoma, I went online to look for more information. I wanted to know everything right away about this condition, the treatment methods, prospects, and outcomes. That’s when I came across the Melanoma Foundation, where I found a lot of information online. Thanks to that, I knew what to expect. This form of melanoma is very rare in the Netherlands. That’s why sharing knowledge is important. By telling my story, I hope that others with this diagnosis will understand that you don’t have to let an ocular melanoma get you down. Personally, I was able to accept the situation fairly easily. I know it doesn’t work that way for everyone, but I still think it’s important to show that you can still enjoy life even with reduced vision. When I heard that I would lose vision in my left eye, the first thing I wanted to know was whether I could still ride a motorcycle. I immediately checked the CBR website to see if you’re allowed to drive with vision in only one eye, and fortunately, you are. I’ve been riding a motorcycle since I was 18. In fact, I got my motorcycle license before my driver’s license. Twenty years ago, I started a motorcycle forum, which now has a few thousand members. Every now and then, we organize rides with large groups. I lead the way on those rides. You could say that motorcycling is an important part of my life, and I’m glad I can still do it. Last summer, I took a beautiful motorcycle trip through the Alps and the Dolomites. I get a liver scan every six months to rule out any metastases. So far, the results have been good. That’s a huge relief, because metastases would present a completely different situation. Fortunately, my type and size of ocular melanoma have a fairly good prognosis regarding potential metastases, so that’s a stroke of luck. Unfortunately, I did develop fatigue after treatment, which means I have to work less and get more rest. The fatigue could be a side effect of the radiation or a result of my non-dominant eye now having to work harder. It’s unclear whether the fatigue will subside, but three years after treatment, I don’t expect it to anymore.
This article appeared in the Melanoma Foundation magazine on pages 23–24–25 (Issue 3, 2025)
