Hi. My problem was a freckle for want of a better word.I was sent to the hospital and it was decided to have  laser or PDT.After a year of six month checks my consultant wanted to make sure this small speck was got rid so I had ruthenium plaque op. That was in July 18. Since then everything healed but I have lost sight in my eye , quite a bit. I’m due my next appt in about a month or so but feel very vulnerable

feed back would help

Hi, like you I had a freckle in my eye which turned malignant earlier this year. I have just had tantalum markers inserted in preparation for Proton Beam therapy treatment in December. I am also feeling very vulnerable and anxious as to what might happen next, ie; vision loss and other associated cancers.

I am 5 days post op now and eye still very sore and with blurred double vision. Am very worried about losing sight etc as was very fit and active prior to this real body blow !

How Are you coping and how has it affected your sight please. I have just joined this site and any support would be helpful.

Thanks

Bob

Hi Bob

to be honest , I’m fine but wasn’t prepared for the amount of sight damage from radiation. At first it was ok , just sore for a few weeks of treating it with drops and cream but then the vision became a problem and I rang up my named nurse who got me an appt with my surgeon.  I’m not sure if I didn’t fully take it in about sight damage but what sight I have is hardly any use. It’s permanent also . All kinds of thoughts go through your head , I think I’m at a low point after dealing with it remarkable calmness, I worry about the abdo checks I have every six months also  

Hi Bob

to be honest , I’m fine but wasn’t prepared for the amount of sight damage from radiation. At first it was ok , just sore for a few weeks of treating it with drops and cream but then the vision became a problem and I rang up my named nurse who got me an appt with my surgeon.  I’m not sure if I didn’t fully take it in about sight damage but what sight I have is hardly any use. It’s permanent also . All kinds of thoughts go through your head , I think I’m at a low point after dealing with it remarkable calmness, I worry about the abdo checks I have every six months also  

Hi Dotspot and Bob66,

I'm a cutaneous melanoma patient, not ocular, but I have several friends with ocular melanoma & they recommend the following website Melanoma Patient Network Europe which has a lot of information regarding ocular melanoma www.melanomapatientnetworkeu.org/ocular-melanoma.html

Angie (Stage 3)

Hi Dotspot

I like your username (Dorothy’s freckle), very sorry to hear about your sight loss. I like you did/do not fully understand the possibility of this as you always want to think it won’t happen to you !. How are you managing to cope with sight loss and how does it affect you ? I am very worried about this side of things.

Thanks

Bob

I had to go to Sheffield from Newcastle right from the beginning.I had laser treatment first three shots at monthly intervals then six month appts. The staff are truly wonderful.In July my consultant discussed ruthenium plaque surgery. Apparently my melanoma freckle thing was small and thin but at this appt he wasn’t entirely satisfied about a small speck so we talked surgery. It was done over five days, I travelled from North East on the Monday morning and had ruthenium plaque surgery done on aft. It stayed in place until Thursday aft then removed. Both ops done under general anaesthetic.I went home on the Friday. I had check up two weeks after and everything was ok. It was a few weeks later that the shadow came in the eye and is now permanent. But on the plus side my good eye is very good so I’m learning to cope . It is worrying as every time I have an ache or pain I relate it to eye problem. Trusting in God helps me but I even have shaky times there.Waiting for December appt and still worrying

Hi 

Thanks for your reply Dotspot. 

I like you am worried about what’s around the  corner but as you say hopefully I will learn to cope and get through this rotten time.

Hope everything goes well with your next appointment in December.

Bob

Good morning Stuart, 

we "the special people" who have this very rare type of cancer and undergone Proton Beam Therapy (PBT) may have been even more special.

During your PBT were you lucky enough to see the Cherenkov radiation?  I did and it was quite amazing.

Cheers,  Tony.