2026 Ocular melanoma (eye cancer)

amystorment

My husband was diagnosed with choroidal melanoma December 9, 2025. He completed plaque brachytherapy January 2026. His biopsy came back Class 1A, PRAME Negative. He's is in a clinical trial studying sight preservation .

amystorment

Eye cancer is rare. If you have a different rare cancer and just want someone to talk to, you are welcome to comment in this topic. We can discuss the rareness of the diagnosis and how that in itself is difficult.

amystorment

amystorment

Husband (B) is really frustrated with his vision. He says his eyes aren't working together. When he closes his left eye, the good eye, everything is covered in a dense fog. 1. He had a hemorrhage during surgery and doc says he has blood floating around in his eye. It will take time for the body to break that down and that will help. 2. He has been on drops that keep his eye dilated. This is supposed to keep his iris from having spasms. Those drops have been discontinued now. It will take time for the dilation to go away. We're hoping that will also help his vision. 3. His tumor is really close to his macula. This affects his center vision. 4. The tumor was under his retina, pushing up on it, detaching it. It was also leaking fluid there. The retina needs to heal. So we are in a waiting phase to see what his vision is going to be like. Lots of unknowns.

amystorment

He's really frustrated. He feels kind of like he's trapped and can't get out.

amystorment

Doc says scarring will slowly take over where the tumor is dying. This will also affect his vision. All of this is okay. As long as it doesn't metastasize. Our biggest fear.

epharp

I was just diagnosed about a month after your husband. I just had my plaque removed on Feb. 10, 2026. Will have my follow up with dr. on Monday. I expected my vision to get better before it gets worse, but it seems worse than before. Not sure if that's because it is still healing, or because I am already starting to lose my vision? Eye is still red and a bit droopy and feels dry. No more double vision, but blurry and "grey" vision.

amystorment

Hello friend. Yes. That's exactly what we were told. Doc said that the radiation would bring down the fluid under his retina and flatten that out. Then his vision would get a little better. His eye is feeling better. No more cocklebur behind his eye. Redness continuing to go away. Eye is getting less droopy. Still is less open than the other one. We were thinking maybe the vision getting better will start now. As the healing gets more underway. He's really frustrated right now though. Exactly as you say his vision is very gray and blurry. He feels like his good eye is trying to compensate for his sick eye and that helps a little. He has a CT scan in April to make sure his body is still clear. He has an appointment a week after that with doc so we'll see what he says then. I will update here as we go along. It's not nice to be going through this, but may I say it is so very nice to have someone to talk to. Please keep updating. We'll go through this together. By the way, I have entered the chatroom here. I've made some friends. They are really nice. We don't always talk about being sick. They can be pretty funny at times. They get going around 9:00 pm central time. There's usually nobody there earlier in the day. Drop in if you feel like it. It's a good way not to feel alone. They all have different cancers and are in different stages of treatment. They are super friendly. Hope to see you there. If not no worries. Talk to you later.

epharp

thanks for responding. It is good to talk to someone. THis cancer is so rare, but the crazy thing is, I actually know someone else who had the exact same thing! acquaintance from college. She does not remember much from the early days, like how long her eye was red etc. but speaking to her now gives me hope. She has lost most vision in her one eye but says you really do get used to it. She still does all the things she did before, drive, read, etc. But her depth perception is a little bit off.
BTW, I’m in southern CA. Where are you? I’ll write here again after my appointment on Monday.

amystorment

We are in TN. Just getting over that ice storm. B's depth perception is definitely effected too.