Anyone have experience with eye cancer?

[JumpUpp]

Went to A&E a few weeks ago after sudden floaters and flashing lights in my left eye. Was seen instantly and all fine no detached retina but diagnosed with Posterior Vitreous Detachment in my left eye. Floaters have disappeared. Occasional flashing lights 3 weeks later.

So all good. A routine look in my right eye detected a ‘freckle’ so was referred back to ophthalmology hospital clinic for standard follow up. Told it’s usually nothing. Went yesterday and after tests / scans etc consultant says I have a large unstable active tumour in my right eye, very near my optic nerve, orange pigmented, that is leaking fluid which is now under the retina. He has referred me via the 2WW process to ocular oncology at Moorfields in London. He said they will investigate if it’s benign or malignant and decide treatment. I expect to hear before Christmas but not sure when the appointment will be. I don’t have any symptoms in that eye. Just wondered if anyone has experience of this.

A friend of mine is mid treatment for this. They removed his eye (not necessary for all eye cancers) they have given him a fake eye which moves along with the other eye. It looks completely normal. Incredible!

Thanks. I understand that the initial treatment whether the tumour is benign or malignant is the same - in that the aim is to stop the damage the growth is doing to the inside of the eye and to preserve vision. I expect your friend’s situation was that the growth had extended beyond the eyeball? If benign then all fine - but it malignant ongoing surveillance for metastatic growths - usually in the liver. I have just heard that I have an all day appointment for assessments at Moorfields next week so incredibly impressed with the turnaround especially at this time of the year as it will be good to have answers and a clearer idea of next steps rather than waiting until next year.

How are you getting on with your tests/treatment OP?

I have just been to Moorfield's for the day of tests you described and was told that I will have to have radiation therapy for mine in a months time.

My uncle has this sadly and unfortunately after radiation treatment they said his only option was to remove his eye. Because he’s in his late 60s he has refused it bless him and said what will happen will happen. He has scans every 3 months and so far nothing nasty .

Mine was declared malignant via imaging at that first oncology appointment at Moorfields. The poor guy next to me was told he had to have his eye removed within a couple of days at that same first appointment. Understandably he was beside himself. I had done so much research that I knew one option on that day was ‘enucleation’ and liver mets with 6-12 month prognosis - so I left there high as a kite.

My tumour is too big and involved with the optic disc and macular to have the standard disc radiation so I am having proton beam radiation (started today - finishing Friday). I am ‘prepared’ for enucleation if this doesn’t work. I had a biopsy to determine the genetics of the tumour ie how aggressive it is and metastatic risk. Will get results in a few weeks. Favourable profile is 10% risk of mets, unfavourable is 90% risk of mets. So this is all that matters really because there is no treatment for uveal melanoma mets in the liver. So I could be more or less home and dry if I get good tumour profile. I will lose most of my sight due to the radiation as my tumour is on my optic disc and macular - but should retain some peripheral vision which is important for balance and I will be able to continue to drive.

The expertise, care and expediency to date has been exceptional which is hugely reassuring. I am currently under the care of 5 different consultants / specialities across 4 different hospitals.

I wish you all the very best.

Anyone else reading this - consider having eye test (specifically with dilated pupils to see back of eyes) whether you have vision problems or not every 2 years for general health screening. This cancer is specific to blue eyed, Northern European heritage.

I had no symptoms in that eye - was randomly picked up from an issue with my other eye.

Oh goodness - so the radiation didn’t work for him? That’s very sad.

I will have an appointment 5 months post radiation to check if the tumour has gone and not grown back.

If the biopsy your uncle had was the mild type of tumour then he’s probably fine on this choice. If it’s the nasty type genetically then I have read that it starts seeding cells immediately from the primary site in the eye - ages before it’s even visible as a tumour in the eye and will seed to the liver - so no getting ahead of that version anyway.

It worked but not enough that it disappeared sadly. I’m not sure on the type but we know it’s a slow grower as it’s been 2/3 years so far and no growth so far. He’s partially blind from all the treatment etc but he flat out refused to lose an eye so we don’t force him.

Most uveal melanoma mets take a time to show up - usually around the 5 year mark for the aggressive one. The slower one needs surveillance for 10-15 years from first diagnosis until you are out of the woods. How they land in the liver is unusual - microscopic dispersal across the liver all as single cells which are undetectable - not a solid tumour - so diffuse tumour and when these do become visible via imagining it’s the end of the road. Fingers crossed for him and us all. It’s a very rare cancer and seems to work quite differently to other cancers I know more about - long time to mets (a good thing), game over when mets detected, and it’s all down to the genetics of that specific tumour either 10% risk or 90%. That’s the precipice I feel I am standing on right now - I have come to terms with losing my sight, even my eye.

100% fingers crossed to all of you. It’s a bloody awful disease. I know when he refused the operation we said why but it’s true until you’re in that situation you don’t know what to do. But there is good prosthetics about you just wouldn’t have your sight. I know he’s under constant scans and had body scans so we pray it’s a long game