Ocular Melanoma

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

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

Good morning everyone,

Ithe optician testing my eyes for my annual diabetes check up found a 'shadow' on the rear face of my right eye (sadly my 'better' eye).  Off to Bath hospital where a specialist passed me on to Liverpool Hospital for 'tests'.  There were quite a few and afterwards we (the Memsahib and I/me) had a chat to the specialist who thought the best course of action was Proton beam therapy.

So under the knife I went, they cut a few muscles to allow them to swivel my eye to the side and sew on the four tantalum 'washers', as a washer only has one hole, I suppose it should be a button!  These buttons were about 1/32" to 1/16" stitched in place to help direct the Proton beam to the correct position how the heck they did it I have no idea but ooodles of respect.

There was very little pain just a bit of discomfort.  Next came a trip up to The Douglas Cyclotron Centre Clatterbridge on the Wirral.  In a previous life I had dealings with a Klystron so the concept wasn't all new to me.

Long chat about the treatment and more measurements to transfer the size of the melanoma to cut a hole in a brass disk (which I have, I'm thinking about making it into a belt buckle)!

Sat in the chair on the first day and a frame was placed around my face and a damp mesh was placed over my face taking up the contours. Finally a 'gum shield' was fitted after me biting down onto it all to ensure I kept my head perfectly still during the treatment.

Xrays were taken of my eye (very pretty it is too), and the treatment began.  Thirty seconds of proton beam zapping my eye (totally painless) for the next four days.  The treatment was staggered so not everyone was seen at the same time each day so we could have a lie in.

During the Proton zapping I saw blue sparkly lights in a disk shape, a little like sequins but smaller.  This I was told was Cerencov / Cherencov radiation and only 'special people see it'!

Well. a while has gone since the treatment and all isn't quite well.  Nothing earth shattering, but my vision through my right eye (the affected one) is slightly smaller and inclined up toards the left.  All I can think of is that my eye hasn't been replaced exactly as it was prior to treatment.

Well. that's my story and if it helps anyone come to terms with this 'slight' problem'  I must add that the paperwork and instructional literature were invaluable.

I have various snaps which I cannot seem to place on this but if anyone would like to see them, please let me know.

Cheers,  Tony

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 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