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.

psalm127345

Hi. My name is Nicole. I’m a 46 year old mother of 5 (ages 27-14). I was just diagnosed with ocular melanoma. It’s all so overwhelming. I have to decide if I want plaque radiation therapy or my eye removed. My doctor is pushing for the radiation therapy. I am just so scared about how it might make me feel. Hoping to chat with others about what the process is like as a patient and what side effects there might be or if it wasnt as bad as you thought, etc. I feel everyone is sugarcoating the info and glossing over everything like it’s no big deal. And maybe it’s not. But I’d feel better hearing it from someone that’s been through it.

amystorment

Hi, psalm. So glad you reached out! It's a rare cancer and there is hardly anyone to talk to. My husband is the one fighting the cancer. I'm a caregiver. I'm going to pass the phone to him. I'll get him to talk with you. It will much better to talk with the one going through it. His name is Bill.

amystorment

Hi, this is Bill. Do you have any specific questions for me. I do not feel like anyone has sugarcoated the info they have given me. My best info is that my tumor genetics are about the best they could have been. It is still frustrating to deal with the poor vision. I have cut out as much processed food and sugar to reduce my chances of cancer popping up somewhere else but don't know if that is as useful as I hope.

amystorment

Psalm, Amy here again. Bill tells me that his surgery was about what he expected. He rates it as uncomfortable. They give you oral pain meds when you go home. His doc said after years of research they have found that survival rates for radiation are the same as for enucleation. Also keeping the eye, when possible, supports mental health. Also, vision preservation varies from one person to another. It's worth trying the radiation. Did they tell you what size it is? Small, medium, large?

psalm127345

thanks. I’ve decided to do the plaque radiation. My tumor is medium sized, but it’s like an oval pancake and one dimension is actually fairly large 1.7 cm. My doctor just has everyone take tylenol, which is fine by me because i’m allergic to all narcotics and opioids. I just learned that they only give a local to remove the plaque. That worries most of all. I dont have the best luck with getting numb from shots and some cause adverse reactions. I’m younger and female, and I think that’s why my doctor is not being as upfront when I ask him for more details. He speaks more directly to my husband. It’s frustrating, but i’m used to it. Besides with so few doctors in this field it’s not like i have easy options.

amystorment

Psalm, you are in a very difficult place. Your doctor should be called out for not addressing you, the patient. I wouldn't be able to resist saying something like " who has cancer, me or my husband? Please address me." You're going to have to learn to be your own advocate. I'm not saying that it a rude way. I'm saying that because I had to learn the same thing. And it's not easy. I was also used to being talked over, talked around, and having others talk like I wasn't even in the room. One day I just got tired of it. I decided that I didn't care anymore about being "nice," being quiet , being totally agreeable. I wasn't put on this earth to make everybody else comfortable at my expense. I completely agree that there are few ocular oncologists and there isn't one down the street you can just go to. Options are definitely limited. My husband was put under general anaesthetic for placement and removal. I don't know if that is because of the location. My husband's was on the very back of his eye. Have they sent you to a medical oncologist yet? They will be the ones to follow up with body scans and watch for metastasis. Please let me know the date of your surgery and keep me posted. I will be here for you through the whole thing and afterwards if you want me to be. I'm a safe listener. I hear people. Talk to you soon, Psalm.