Been referred to ocular oncology at Moorfields…

[Mussyy]

Hospital consultant found large active lesion in my eye, touching optic nerve and leaking fluid under retina. I have an appointment at Moorfields next week for further tests to determine if benign or malignant.

I’m sorry OP - that sounds really worrying for you.

The one thing I can say is that in this situation, Moorfields is the best possible place to be referred to.

What a worry but what the PP said, the best possible hospital. Good luck next week.

I had oncology treatment at Moorfield. You're in the best possible hands. I know its hard, but try not to worry too much for now - you will get every kind of help and support you need once you are seen. Big hugs.

And please, whatever you do - dont Google.

@Mussyy how are you getting on?

I was referred to Moorfield in January and was diagnosed with an ocular melanoma. I am due to have radiotherapy in two weeks.

@FallenNight- welcome to the club no one wants to join …. I am nearly 2 weeks post proton beam radiation. Waiting very impatiently for a genetic profile of the tumour which will determine whether it’s a low chance of spread (10%) over the next 10 years or very high (90%).

Fingers crossed for you @Mussyy I hope you are in the 10%. I think I'm having a different treatment, they said a radioactive disk stitched to my eye. 4 days in hospital while it's there then another op to take it out. But I think that may be because yours was touching your optic nerve and mine doesn't. I was told they don't always do the DNA testing only if requested! Which surprised me. Wishing you all the very best. 💐

How are you getting on @FallenNight? I hope that the treatment was tolerable for you.

I was very lucky to get the better odds from my biopsy (not an ‘all clear’ but much lower chance of spread). I also have to have injections into the back of my eyeball for the next two years to delay the loss of sight in that eye caused by the proton beam radiation (as it had to hit the macular and optic nerve).

Hi @Mussyy I'm glad you had a good result on the test. Due to a clerical error my surgery was cancelled. I'm waiting rather impatiently for a new date.

Oh goodness the stress of waiting is intolerable. I am sorry that you have that unnecessary and avoidable stress on top of everything. Will you have a biopsy to determine the nature of the tumour / risk of spread?

I was advised against it as they said it was more trouble than it's worth just treat and move on. But I did say I wanted to test. It's such a pain. I had organised child care, told school, dropped the kids at a friend's for the week, got into the hospital gown....then came home again!

Goodness that’s so disruptive. I really hope you can get your treatment done soon. Best of luck to you.

Hi, apologies, realise its a slightly old thread but I'm currently waiting for my appt at the regional ocular oncology dept to find out if my lesion is a melanoma or not. Can I ask @Mussyy @FallenNight what symptoms you had and how the treatment was? Did you have long to wait between diagnosis and treatment? I know my lesion may not be a melanoma but I sort of hoped they'd review my scans and say it was nothing to worry about, not give me an appointment! So inevitably im fretting a bit and counting down to the days. Thank you!

I am sorry you are going through this right now - the stress of uncertainty and waiting is the worst. I had an appointment at local hospital who then referred me to Moorfields and I had my assessment with them about 3 weeks later. This appointment at MF was lots of scans during the day and a final appointment with the consultant who determined it was malignant from the imaging. I then was referred for proton beam treatment (most have radiation disc treatment and I don’t know the timelines for this) which required a surgical procedure which all happened within the space of 6 weeks. I had minor symptoms and pain from the treatment - but I was consumed by it emotionally throughout. Best of luck to you - I can say that every thing was done at lightning speed and at every step of the way I was totally reassured that I was being cared for by experts and people passionate about their job.

Hello, sorry to hear your on this journey. For me there were 0 symptoms before diagnosis. A freckle was spotted years ago at a routine eye test which was monitored. At the latest appointment it had grown so I was referred to moorfields as it had grown. I saw them 3 weeks later I think, and was booked for treatment no more than three weeks after that. (Though mine was then cancelled due to an admin error) They confirmed melanoma and it was treated by plaque radiotherapy. Two procedures one to fit the plaque one to remove it a few days apart. It was sore and incredibly boring while in hospital. Drops after leaving hospital and still sore and swollen for a few days but back to normal in a couple of weeks. Follow up will be 6 months later to see if the treatment worked. I think it will be monitored for life now.

@Mussyy thank you, sounds like a similar trajectory. Ive been seen and scanned at my local hospital and got an appt in 3 weeks at the regional centre. And as you say its the waiting and uncertainty thats the worst. Im too far north for MF but im guessing any specialist centre is going to be on the ball. How are you now? Any side effects from the treatment if youre happy to share?

@FallenNight thank you too, how are you doing now? And it sounds like a frustrating journey with an admin cock up, but good that they were monitoring you in case of changes. At least I dont have small people to worry about and organise!

@Mussyy @FallenNight sorry, another question! Did the diagnosis and treatment affect your ability to drive if youre a driver? No partner so thinking about practicalities if they do confirm the diagnosis. Thanks

There are only 4 specialist regional centres covering the UK - Moorfields, Liverpool, Glasgow and I think Sheffield where eye cancer is diagnosed and managed. I had my treatment in Liverpool as this is the only place in the UK with the proton beam machine. I didn’t have any symptoms prior. I am fine now - some discomfort after the procedure which has now gone. I will lose my sight in that eye due to where my specific tumour was located in my eye - collateral damage from the proton beam treatment. I am having quarterly injections for the next 2 years of Avastin into to my eye to delay sight loss - I can drive now and will be able to drive even when my sight deteriorates. I will have scans every 6 months for 2 years to confirm the tumour isn’t growing back.

I was fortunate as mine was located in an easier to treat position to Mussyy. I was told originally that I would not be able to drive for two weeks post treatment. But then told that technically so long as one eye works it's legal to drive. But no driving home as I was discharged and hour and a half after my second surgery. My vision should be unaffected after two weeks. But due to the treatment I am more likely to suffer from eye problems usually common in older age. So cataract and glaucoma. I am early 40s so was told it's quite uncommon in people my age which means my vision in that eye will.sugger at an earlier age. The other should be fine.

Thank you both @Mussyy @FallenNight thats reassuring to know. The lesion doesn't appear to be near the optic nerve so if it is a melanoma that should make things more straightforward. Roll on June and hopefully some answers and I wish you both a positive outcome.

I am in a similar position and would appreciate any updates as to how you are all getting on. Found a lesion as part of a routine eye test, referred to hospital who said as it is leaking fluid and near optic nerve I need a referral to Liverpool. They could not say either way if it was benign or malignant. I have a five year old and am consumed with anxiety while I wait for the referral from Liverpool to come through.

I hope you are all well - such a terrifying time.

Hi @GreysAnatomyMeredith sorry you're in this position as well. It's a horrible and consuming place to be. I have my appointment next week at liverpool and im pretty much counting down the days so I can have some certainty. Once my scans had gone off to Liverpool the appointment came through very quickly so hopefully you will get your appointment soon. Ive been keeping as busy as possible as that makes the waiting easier. I imagine your 5 yr old will keep you pretty occupied which is no bad thing. I hope its a positive outcome for
you, just try to take it a day at a time.

Hello @GreysAnatomyMeredith- I am sorry that you are going through this. I am 6 months post diagnosis and 4 months post proton beam treatment and doing fine.

My understanding is that only the ocular oncology team at either of the 4 centres (Moorfields, Liverpool, Sheffield, Glasgow) are qualified to determine if the lesion is benign or malignant - so that’s why you have been sent there - assume from your ophthalmology service at your local hospital? They do this by lots of imaging assessments/scans on your appointment. It might well be benign - but if it’s growing and threatening your sight then it might need treating anyway.

I was assessed at Moorfields in London within 3 weeks of referral from local hospital. They determined it was malignant at the appointment (in for most of the day) and then they scheduled the treatment there and then for as soon as possible. Most people will have the disc radiation method at one of the 4 specialist centres. I was referred up to Liverpool as that’s the only place with a proton beam machine in the UK and this treatment is for tumours that are on or too near the optic nerve. The treatment was painless - and the staff were wonderful. The stress was the shock, the uncertainty, the waiting etc. I haven’t had my post treatment scan yet to confirm it has worked and I know that I will slowly lose my sight in this treated eye over the next year - but I will still be able to drive.

Hi @GreysAnatomyMeredith mine was malignant but in a more helpful position than Mussyy's so I had the more common disk treatment. Was in hospital for three days, it's was uncomfortable but bearable.

I was told that disk treatment is effective in 95% of cases which is reassuring. I was also told that they estimate my chances of it spreading is 3% if I have the low likelihood gene and 6% if I have the high likelihood. They couldn't do the biopsy for gene analysis on me at the time I had treatment for admin reasons. So I'm assuming the worst which is a 5% chance the treatment is ineffective and a 6% chance it will spread. I'm taking this as good odds. The % was based on calculations made by looking at the size (radius) thickness and type of cells visible in the photo taken (orange dots were not good).

I guess what I as saying is that my consultant was very reassuring that found in early stages not too big it's treatable the treatment has a high success rate and spread is low risk.

I have been referred for a liver scan ( that's where it spreads to) as a precaution and as I am on the younger side for being diagnosed with ocular melanomas.

They will look after you and it should be fast.

@Mussyy @annonymousnamechange @FallenNight Thank you so much for taking the time to reply - I hope all goes well for all of you. You have been really reassuring and have really helped me today.
I have been spending too much time googling and terrifying myself of the worst case scenarios, and worrying about the long term impacts. I was told I was referred to Liverpool last Wednesday as there is fluid by the lesion. Dr at the local hospital said that this was a sign of malignancy, but he couldn't see it on the ultrasound and there was no orange which are apparently good signs. He said due to the location near the optic nerve it would impact my sight.
I am due to have dye put in at my local hospital next week and I believe that the imaging will be sent along with my referral. Like you have said - it is the unknown that feels so difficult at the moment. Thank you again - please do let me know how you get on.