Hi I've been looking for post as last Wed 6th Nov I was diagnosed with Ocular Melanoma and been told I have to have my eye removed the lid act,I'm in complete shock and looking for any advice or anything really I'm just waiting on my operation date now.Hope your doing well.

Hello.  I do hope you are well. My hubby had a routine eye test for glasses. He was sent to A and E. They thought he had a detached Retina...but it was confirmed to be a lesion. Hubby was referred urgently to eye hospital. Who confirmed melanoma of his left eye. Put on a cancellation list and two weeks later had enucleation. Scans are clear. Hubby will have to have scans every 6 months as the cells can travel to the liver. It has been a roller coaster of emotions.  Very little is known about ocular melanoma and it is very rare. It is also hard to find anyone that has gone through this. But we have a healthy view on how we cope with this. Its a condition just like any other. So people take meds for high blood pressure or diabetes and you get on with your life. Dont suffer in silence and above all refuse to be a victim. Live your life to the fullest and make beautiful memories together. Wishing you blessings and peace

Hi Lara

Hope you are doing well. Basically hubby went for his routine yearly eye test. He was sent straight away to eye casuality. They diagnosed a lesion and referred to a hospital in Sheffield. Several tests and diagnosis same day. No other treatment other than enucleation would work. Hubby had his left eye removed 4 days ago. The same morning 10 mins before going for surgery we were told the liver scans ect were clear. We just cried with joy. So he had no pain after surgery and remains the same. He was home 24 hours after surgery. 72 hours after surgery the district nurse came to remove the pressure bandage and clean the eye and put drops in and then antibiotics in. Its 5 days now and a little bit bruised but looking great. Infact it throws me..i clean the eye lid with sterline water and put the meds in and it looks like he has his eye still just with a pink hue instead of white  so basically they removed hubbys eye. They put an implant in and attached the muscles ect back and attached a membrane over the implant. He will have his bionic eye in 7 weeks. The artificial eye moves normally so if you look up both the eyes move in the same direction. I have been shown what the new eye would look like. It looks great! He is happy to be alive and is happy to be here making memories with his children and me. The consultant was not in favour of doing a biopsy in the begining as it would disturb the tumor which was very big and in turn would make it bleed. So no biopsy done.  So best to go with enucleation as we know this to be a small price to keep your life. Hubby will have to have scans every 6 months but we will cross that bridge when we come to it. Positivity is key! Life is Life..enjoy and be happy. Im always here if you would like to speak to anyone. Blessings and peacw to you. Jen

Hi

I just came across this forum and read your post. I was diagnosed Oct 2018 even though brachytherapy was in January 2019 in one of biggest public care hospitals in Madrid.

I found it very difficult to find information on ocular melanoma in Spanish, and I am pretty sure ther is no support appart from the national cancer association (which, by the way does not even mention this rare cancer on its web page...)

Since May 2019 we started to contact some ocular melanoma patients through the spanish national cancer association online forum...and we have a tiny Spanish speaking group of around 20 people, both Spaniards and Latin American... We share our situations, ask for advice, coment on our different treatments (some enucleated, one TTT and majority of brachytherapy plaque..), and cheer up eachother when we feel anxious thinking on cancer spreading to the liver ..

I had to do all the ressearch my self as well... That's why I've been thinking to start some sort of website to gather information,  in Spanish, to help those recently diagnosed... since I think I am not dumb...but it really took me a while to access understandable information (non scientific papers) on ocular melanoma in Spanish.

I hope you are feeling better.

As per myself, my sight is quite ok. I have a dry eye and huge photosensitivity due to radiation, but so far my tests are ok.

Best regards

Hello Penny, 

yep I'm still here although I read contributions to this site once in a blue moon.  My eyesight is slowly going downhill,  I'm struggling to compose a letter for inclusion in the club magazine of the vintage vehicle I'm trying to restore but have come to a grinding halt due to my failing eyesight, osteoarthritis isn't helping either, trying to fit a srewdriver into a screw is a real hoot as I have to stop and dab the tears from my eyes every few seconds (as I'm doing now typing this letter).

I'm hoping a club member will take over and finish the restoration and allow me to drive the trike for the couple of years driving I have left before 'those in authority' say "Hand your licence in"!

I sincerley hope the operation goes of well with 100% SUCCESS.  eventually you will be able to take the patch off and not end up "Up poop creek without a paddle".  I mentioned a belt buckle, well it's made and I'd like to show a snap but don't have the technical knowhow.  If anyone out there knows how, spill the beans.  I promise to go to this website more often to help in any way I can.

Fingers crossed for both of us.  Cheers,  Tony.