Hi Noeyehere

Apologies for using your forum name but you are happy with it, I presume.

I'm sorry for your diagnosis and ongoing treatment especially the loss of your eye which can be emotive to many.

I just thought I would bump your posting as it has got a little left behind and maybe someone new will see it.

Hoping the cancer has been 'fixed' and that the continuing monitoring will keep it that way.

Best wishes

David

I am assuming no one has any experience with this type of Cancer due to the lack of responses?  I have found Ocumel UK where I have been able to speak to people going through a similar experience to me - I just had hoped there would be more support in general, currently I feel abandoned by the world, medical profession included.  I have an appointment tomorrow with the Ocular Oncologist so maybe I'll get some answers - who knows?  I am just amazed there is no support or counselling offered - we'll just take your eye out and monitor you six monthly but when it hits your liver your basically finished!  In all truth the medical staff have been great with everything except addressing the emotional impact of this disease - family and friends all assume once the eye is removed you are 'fixed' which is far from the truth which leaves no one to talk to.  I know trawling the internet is not the best thing to do but night after night when you cannot sleep it is the only information out there - I do generally stick to Cancer Research, Macmillan and Ocumel but I have found myself reading scholarly articles which I don't fully understand so I end up focussing in the negatives.  Aologies for the rant but another night if no sleep and I just don't know where to turn.

First of all, apology for not checking if you had any replies. Few of us here are professional counsellors, we are led here by circumstance and posting can be very irregular. When I look at new posts I try to find ones with no replies first and hope I have something productive to say. In your case you had not received a reply for some time so I bumped you. Possibly not a good idea as it seemed as if someone was usefully replying.

Your cancer is rare and I think there may be few current members with your experience, Many of us are 'fixed' with surgery and for instance lose the use of part of their body for a few weeks or have more radical excisions. Suddenly losing an eye is so life changing that few can share that and so I believe may be the reason for no response. But as you have said you were looking for emotional support.

I can agree that once the surgeon has had his way many people assume you are fixed but internally it is the future uncertainty is the most draining for me. I have tried Google Scholar and unless it is your field of study it can be too difficult. I am waiting for my oncologist in a week or so and I hope that will give me the best opportunity to understand what my choices are and to make the best one.

Maybe tomorrow's meeting will help you more than all your searching and reaching for support.

If you are okay with coming back and talking about it please do.

Kind regards

David

Thank you

Hi noeyehere

I don't know whether you will read this or not... I'm basically just searching for someone to talk to... I came across this post from last year and I know it probably won't reach you but I have nothing to lose. 

I was diagnosed with ocular melanoma 4 months ago, I was referred to a specialist hospital in London, but I needed a second opinion as eye removal wasn't an option for me... I ended up having micro surgery in Spain and radiotherapy where they removed some of the tumour from inside the eye and radiotherapy on the rest of the tumour...

I was feeling pretty hopeful as I still have some sight left in the eye but after reading about cancer spreading to the liver I am now feeling so anxious and low... And almost feel I have no support in the UK due to having had my op in Spain. Reading you r post was like you were reading my mind, if I go to the gp, he doesnt know what to do with me, the eye unit in the south isn't specialised in this and I have been offered 0 support. Cancer is a silent killer and although we may look normal we are at high risk of the cancer spreading to the liver, but noone really tells you this... I've had to do all the research myself...

I'd love to just be able to talk to someone going through the same thing... 

Thank you 

Lara

Hi noeyehere

I don't know whether you will read this or not... I'm basically just searching for someone to talk to... I came across this post from last year and I know it probably won't reach you but I have nothing to lose. 

I was diagnosed with ocular melanoma 4 months ago, I was referred to a specialist hospital in London, but I needed a second opinion as eye removal wasn't an option for me... I ended up having micro surgery in Spain and radiotherapy where they removed some of the tumour from inside the eye and radiotherapy on the rest of the tumour...

I was feeling pretty hopeful as I still have some sight left in the eye but after reading about cancer spreading to the liver I am now feeling so anxious and low... And almost feel I have no support in the UK due to having had my op in Spain. Reading you r post was like you were reading my mind, if I go to the gp, he doesnt know what to do with me, the eye unit in the south isn't specialised in this and I have been offered 0 support. Cancer is a silent killer and although we may look normal we are at high risk of the cancer spreading to the liver, but noone really tells you this... I've had to do all the research myself...

I'd love to just be able to talk to someone going through the same thing... 

Thank you 

Lara

Hi,

I've replied to you on your other post & I've sent you a friend request. Please accept it so I can give you details of support for ocular melanoma.

Angie (melanoma patient)

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