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.