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I was just diagnosed with a rare eye cancer and am looking for advice on what to expect when losing an eye. (self.Blind)
submitted by Willowrose143
This is my first post, not sure what I am doing and apologize for any errors I make.
As title stated I was just diagnosed with Choroidal Malignant Melanoma, which is a tumor inside the eye in a bad spot close to the front of the eye. I was told my only choice is plaque radiation or eye removal. I am told Proton Radiation is not an option as it will destroy too much of the eye and chance of keeping any vison is a lot less. Has anyone else gone through this and do you have any advice for me? Ocular/Oncologist says even with plaque radiation I can lose the sight in that eye. I only have a 10 to 20% chance that I will retain my sight. But the cataract I have is already dense from the tumor and I have to wait another year to have the cataract removed and no idea if sight might be restored. Doctors are saying the blurriness I have is from the cataract made worse by the tumor. The tumor is medium size stage 2 in the ciliary body. Also I was told intense pain is possible with radiation and that there is nothing that will relieve that pain. And more than 50% of patients come back to have the eye removed after radiation as the pain/inflammation is uncontrolled. I was told that eye removal pain only lasts a day or so. Vision in this eye decreased over 3 months to blurriness and now left eye is only seeing blurry. Luckily my optometrist sent me to a cataract doctor who sent me to a retinal doctor who sent me to Ocular/Oncology. All within one month. This Friday I go for a body scan as the danger is that this cancer will spread to other organs. I waffle between wanting a choice and what is the best for my family and my quick recovery. Complications are that I have a history of medication reactions so taking a strong pain killer might be out of the question. Any suggestions on how to prepare for loss of this eye and being comfortable with whatever decision I make?
Also if possible, does anyone know of any other communities that might be more appropriate for this question? Thank you.
As title stated I was just diagnosed with Choroidal Malignant Melanoma, which is a tumor inside the eye in a bad spot close to the front of the eye. I was told my only choice is plaque radiation or eye removal. I am told Proton Radiation is not an option as it will destroy too much of the eye and chance of keeping any vison is a lot less. Has anyone else gone through this and do you have any advice for me? Ocular/Oncologist says even with plaque radiation I can lose the sight in that eye. I only have a 10 to 20% chance that I will retain my sight. But the cataract I have is already dense from the tumor and I have to wait another year to have the cataract removed and no idea if sight might be restored. Doctors are saying the blurriness I have is from the cataract made worse by the tumor. The tumor is medium size stage 2 in the ciliary body. Also I was told intense pain is possible with radiation and that there is nothing that will relieve that pain. And more than 50% of patients come back to have the eye removed after radiation as the pain/inflammation is uncontrolled. I was told that eye removal pain only lasts a day or so. Vision in this eye decreased over 3 months to blurriness and now left eye is only seeing blurry. Luckily my optometrist sent me to a cataract doctor who sent me to a retinal doctor who sent me to Ocular/Oncology. All within one month. This Friday I go for a body scan as the danger is that this cancer will spread to other organs. I waffle between wanting a choice and what is the best for my family and my quick recovery. Complications are that I have a history of medication reactions so taking a strong pain killer might be out of the question. Any suggestions on how to prepare for loss of this eye and being comfortable with whatever decision I make?
Also if possible, does anyone know of any other communities that might be more appropriate for this question? Thank you.
[deleted] 2 points 2y ago
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Willowrose143 [OP] 1 points 2y ago
Thank you for responding. This is what I needed as no one has advised me yet on what to expect with eye removal just radiation and all aspects of that just sound very bad. Do you have to use eye drops or anything to lubricate the prosthetic eye? Why do you have to have a new eye made?
Willowrose143 [OP] 1 points 2y ago
Thank you for sending me the link to "Lost eye". Perfect site for me. I sincerely appreciate your posting.
PerspectiveNo7728 1 points 2y ago
My mother had a prosthesis made after having her eye removed due to ocular melanoma. Most people could not tell which eye was natural and which one was a prosthesis. She used both silicon based eye drops and the natural tears kind found in pharmacies. She received a polishing every 6 months from the ocularist and took her prosthesis out to clean (at home) every so often as needed.
[deleted] 1 points 2y ago
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calnuck 1 points 1y ago
Hi there - checking in a year later! Hope you're doing well and was wondering how the treatment and recovery went.
I'm 5 years past treatment for choroidal melanoma, and am clear so far on the cancer front. The blindness (right eye) sucks and 5 years later I'm still not "used to it". It's a PITA every day - bumping into door frames, being surprised by people coming up on my right, no depth perception. I hope your experience is better, and you're dealing with the life change well.
Let me know if you have any questions about my longer-term experience. Best wishes!
I'm 5 years past treatment for choroidal melanoma, and am clear so far on the cancer front. The blindness (right eye) sucks and 5 years later I'm still not "used to it". It's a PITA every day - bumping into door frames, being surprised by people coming up on my right, no depth perception. I hope your experience is better, and you're dealing with the life change well.
Let me know if you have any questions about my longer-term experience. Best wishes!
Willowrose143 [OP] 1 points 1y ago
Hello. I am one year post plaque for the same ---a choroidal melanoma at the front of my left eye. So far so good. My biopsy showed I was low risk for metastasis at 1a Prame positive. I just had cataract surgery on it as my vision in that eye was almost gone from the thick cataract that formed from the tumor. I have since found a great support site for this - a Facebook group for ocular melanoma patients. My other problems with my eye are minimal. No longer much depth perception. A wrinkle in the lens and a thick membrane from the radiation that can be treated by laser when they get too bad. Do you get ocular oncology and body oncology scans yearly? They just announced the FDA approved a drug for our cancer, but you have to meet the criteria of HLA. My most difficult issue was the 6 months of extreme fatigue and brain fog following radiation to the eye. I'm pretty active and felt I should still be outside working, so that was a huge struggle.
princesssym 1 points 2y ago
Abit late to reply but have you joined the Ocumel charity group on Facebook? ( https://www.facebook.com/groups/272872522878571/?ref=share )
I had proton beam therapy but there's lots of people in that group who have had experience with both other options. Brilliant support to help you with what your going through
I had proton beam therapy but there's lots of people in that group who have had experience with both other options. Brilliant support to help you with what your going through
siriuslylupin6 1 points 2y ago
I am writing to say losing Vision is not the end of the world especially only in one eye even if it was in both let’s just say. I am totally blind and live a full and fulfilling life so it’s very possible and I am quite capable so yeah.
Willowrose143 [OP] 1 points 2y ago
I sincerely appreciate all the advice as each bit gives me a different perspective. For me its a journey I have to take and to figure out the best way to do it. I do have several extended family members who lost all sight from glaucoma but did not know them well. They have all passed otherwise I would be asking them for advice.
siriuslylupin6 1 points 2y ago
Please feel free to message and ask question I am totally blind and very capable and enjoy helping so yeah.
And yes the journey can be difficult and daunting but if you persevere and learn you can make it uncertainty can be crippling but trying for it is the most important thing. I think it’s scary to lose more and more vision but learning and adapting is possible so many people lose vision then give up thinking it’s the end of the world and it’s like no I am totally blind and I am fine I live my life and things are still quite possible.
And yes the journey can be difficult and daunting but if you persevere and learn you can make it uncertainty can be crippling but trying for it is the most important thing. I think it’s scary to lose more and more vision but learning and adapting is possible so many people lose vision then give up thinking it’s the end of the world and it’s like no I am totally blind and I am fine I live my life and things are still quite possible.
Willowrose143 [OP] 1 points 2y ago
Thank you so much for sharing. My problem at the moment is not focused on losing the vision in one eye as it is already blurry from the tumor. I think right now I am more concerned about the cancer and that it can spread from the eye to both eyes and other places in my body. I'm choosing radiation in the hopes I can retain some vision. But if things go bad then certainly having someone I can talk with like you would be a valuable asset. When I first saw my doctor he only spoke about eye removal and how bad radiation would be for me and I was put off by that. So I am struggling right now in trusting him even if he is the best in his field. This site has helped me so much in giving me tips on what to expect on my journey ahead. I hope that whatever happens I have the strength of character that you show. Thank you.
siriuslylupin6 1 points 2y ago
Yeah, no problem I was just trying to give you a perspective. And well for some it definitely takes more work.
And that makes sense.
If you ever need more help adapting or adjusting just say something.
And that makes sense.
If you ever need more help adapting or adjusting just say something.
Sapient_G 1 points 2y ago
Don't know how late I am with this response but I dealt with ocular melanoma myself last year and did the plaque surgery. On the outside the eye now looks great but the vision will never be what it was before the tumor. My doctor said that depending on the person anything can happen to the eye afterwards but the goal of it seemed to be preservation over the eye itself over vision so that's something to consider for anyone who has it.
Willowrose143 [OP] 1 points 2y ago
thank you. I've chosen the plaque surgery which will happen in 4 to 6 weeks. Can you describe how that was for you? How long was it left on? only done once? I was told I will probably lose all vision immediately. I have to wait a year for the dense cataract to be removed to see if I have any vision left. Was your melanoma malignant? and if so did the cancer spread? Any tips that helped you that you can share? With your recovery etc? Thank you so much for responding.
Sapient_G 1 points 2y ago
Mine was malignant but I think mine was caught early enough that it didn't spread. At least I haven't heard anything after I had tests done for them to see.
So I only had two surgeries. One to put it in and one to take it out. Mine was in for about a week. And I'll be honest it sucked. They had to cut a certain muscle in my eye to make room for it so when I did open the eye to put drops in I had this weird off putting vision since my eye was by default staring to the right and I couldn't move it so I kept my eye closed or patched up. I had insane headaches most of the time but I was given pain meds to keep that down so most of my week was sleeping after taking the meds to control the headaches and watching hulu or Netflix in the dark when I was feeling okay. I talked to my friends and family constantly as well since they were worried of course, you're asked to distance yourself a bit from people while the plaque is in and I was especially isolated as this happened right as covid started hitting cali and everything was shut down or shutting down. These little things can keep you out of your own head which will be your worst enemy during this.
The week, although sucking ended up going by pretty fast though at least looking back on it since I was sleeping most of the time, and once the plaque is removed most of the really bad pain was gone but there's some mean tenderness and I usually kept it covered with the eye shield they give you so you don't roll on it when you sleep and such. I don't know if you'll be getting the muscle cut like I did but if you do your doc will probably tell you to do eye exercises so that the muscle doesn't get a lot of scar tissue although it will hurt at first when you try looking around with it. You'll also be on a bunch of drops that you'll have to take like 3-4 times a day, one of them being dilating drops so sunglasses are a must.
I am still going through recovery myself so I can't say what the end looks like just yet but one thing I can say for certain and I know it sounds cliche but positivity is everything. I got tired and upset of hearing it all the time from people who didn't understand what I was going through, so I hope hearing it from someone who does, helps you; take care of your mental health and let the doctors worry about the rest.
So I only had two surgeries. One to put it in and one to take it out. Mine was in for about a week. And I'll be honest it sucked. They had to cut a certain muscle in my eye to make room for it so when I did open the eye to put drops in I had this weird off putting vision since my eye was by default staring to the right and I couldn't move it so I kept my eye closed or patched up. I had insane headaches most of the time but I was given pain meds to keep that down so most of my week was sleeping after taking the meds to control the headaches and watching hulu or Netflix in the dark when I was feeling okay. I talked to my friends and family constantly as well since they were worried of course, you're asked to distance yourself a bit from people while the plaque is in and I was especially isolated as this happened right as covid started hitting cali and everything was shut down or shutting down. These little things can keep you out of your own head which will be your worst enemy during this.
The week, although sucking ended up going by pretty fast though at least looking back on it since I was sleeping most of the time, and once the plaque is removed most of the really bad pain was gone but there's some mean tenderness and I usually kept it covered with the eye shield they give you so you don't roll on it when you sleep and such. I don't know if you'll be getting the muscle cut like I did but if you do your doc will probably tell you to do eye exercises so that the muscle doesn't get a lot of scar tissue although it will hurt at first when you try looking around with it. You'll also be on a bunch of drops that you'll have to take like 3-4 times a day, one of them being dilating drops so sunglasses are a must.
I am still going through recovery myself so I can't say what the end looks like just yet but one thing I can say for certain and I know it sounds cliche but positivity is everything. I got tired and upset of hearing it all the time from people who didn't understand what I was going through, so I hope hearing it from someone who does, helps you; take care of your mental health and let the doctors worry about the rest.
Willowrose143 [OP] 1 points 2y ago
You have given me more information than the doctors have so thank you. I had no idea what to expect except for what you have shared. Mine is at the front of the eye near the nose, medium sized. Where was yours? My first appt was all aobut how bad radiation would be, no handouts except the prosthetic eye paperwork. Now doctor thinks I will handle radiation okay so I am going to try that first. (after I asked for a second opinion) Wish he had been more forthcoming in the beginning because it caused trust issues. If things go wrong I know I can go for eye removal later. Did the radiation take care of the tumor? I have a lot to look forward to and this is not the first major life issue we have faced. I know that mental health is important so yes it is important to take care of myself. I just started seeing an acupuncturist so hoping that helps also. Did you try any alternative therapies or change your lifestyle at all? Thank you so much for sharing. That was very important to me and I am going to share this with my family.
Sapient_G 1 points 2y ago
Mine was in the back of the eye near/on the center of vision. And according to the last pictures they took my tumor is still there but dead and has shrunk slightly. I also get this medicine injection every three months or so which is supposed to limit the damage that the radiation did to my center of vision the first one was only a few days after the plaque removal so when they did that one even with all the numbing they did I ended up feeling everything and it was hands down the worst pain of my life, I still get shivers and anxiety thinking about it so if you have to get that I'd request to be knocked out for it. The others went by much better although I see a therapist now to deal with the PTSD I got from that first injection as I now freak out when things get near that eye.
The only major lifestyle change so far is that I can't/don't drive at night anymore due to my night vision being damaged by the tumor, and when I adjusting to my new normal all the depth perception problems that came with that. Driving normally during the day isn't an issue although I tend to drive a bit more carefully and parking can sometimes be annoying which can be mitigated with backup cameras and such to deal with the depth perception issues.
I wasn't given a lot of info either because our condition is rare and since people are affected differently, the doctors don't want to tell you something then it be wrong or different and they get sued or something I'm guessing.
The only major lifestyle change so far is that I can't/don't drive at night anymore due to my night vision being damaged by the tumor, and when I adjusting to my new normal all the depth perception problems that came with that. Driving normally during the day isn't an issue although I tend to drive a bit more carefully and parking can sometimes be annoying which can be mitigated with backup cameras and such to deal with the depth perception issues.
I wasn't given a lot of info either because our condition is rare and since people are affected differently, the doctors don't want to tell you something then it be wrong or different and they get sued or something I'm guessing.
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