Hi I have very recently (3 weeks ago) been diagnosed with Ocular Melanoma in my left eye. The tumour was too large to treat and I therefore had enucleation (removal) of the eye last Wednesday at Moorfields eye hospital in London. I have found the support group Ocumel UK who have been great - however, being a rare cancer thereare not too many members - and they are spread far and wide. I am struggling with having no one to talk to about 'what next' I am waiting for the results from the biopsy and genetic make up of the tumour which will inform my long term prognosis. I know I will be monitored for life, although the MRI and PET-CT scans taken last week are both thankfully clear. Family seem to think that they treat the eye and you are 'fixed' - how do I explain this to them without coming across as negative and only focussing on the worst case scenario. I am determined to fight this but I have so many feelings and emotions and no real outlet for them. I woneqr if it is worth me joining a local,cancer support group or are these generally linked to a specific type of cancer?
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.
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.
I noticed you were looking to connect with others that have had the same diagnosis or been in a similar situation so I just wanted to put you in touch with @Rob50 and @Lorrainew as they've both posted on the forum about ocular melanoma in the last few months. You may like to chat to @JIE_1985 as their dad also has this diagnosis.
Although this discussion is from last year you may still find it useful to read this discussion where two of our members are chatting about their treatment and journey with this type of cancer so do feel free to join in so you can try and connect with them as well.
Joining a local cancer support group sounds like a great idea and you can find out more about how to do this just here.
I hope this helps noeyehere and I'm really glad the scans taken last week came back clear
Steph, Cancer Chat Moderator
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.
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...
as i type, i wonder if you are still on this forum, as your treatiment was bak in April. Im about to go for my proton beam Therapy for a tumor on back of better seeing eye. The sight in my bad eye is BAD! due to a tear in the retiner.
Pleas tell me: how bad is your sight now? After each treatment, will i be able to see our of the eye? can i take my patch off? If i have to reply on just my bad eye to see, im up **** creek!
Any honest advise will be most appreciated.
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.
I'm sorry to hear you have been diagnosed with this rarer type of melanoma. I am a melanoma patient but not ocular (subcutaneous), however I have information regarding support for ocular melanoma patients that I would like to send you. I will send you a friend request - if you accept it I can then send you the information by private message. I wish you well with your surgery and treatment.
Angie (Stage 3 patient)
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
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