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.

Quick update for anyone who's following or interested. Had the diagnosis confirmed today but fortunately not near the optic nerve so can be treated with a disc. Im booked in for surgery next work but could have gone for tomorrow had the circumstances been right! @GreysAnatomyMeredith if its any consolation the waiting is waaaay harder than the diagnosis (which you hopefully won't get). And the consultant was really positive about the outcomes so although its scary it doesnt feel awful. Hope you get your appointment through soon.

@annonymousnamechange Thank you for the update - I have been thinking about you the last couple of days. That sounds really encouraging, and it is clear that they are really looking after you. Thank you - I am still waiting for my referral but am hoping to hear soon! My local hospital has booked me in for Fluorescence optical imaging this week, so I am hoping that Liverpool are just waiting for that. It all feels very surreal. I am hoping I will feel better once I have definite answers! Good luck with everything, I hope the surgery goes well.

You are absolutely right that the waiting is hideous - it’s just a blank space vacuum that your spiralling mind and Google can fill with horror stories. All I can say was from the moment I was diagnosed every thing was expedited and accelerated. Everyone was incredibly professional and I felt hugely cared for and supported. Glad that your radiation procedure is so soon. It’s much better on the otherside.

There is a lovely patient support charity for those with ocular melanoma called Ocular Melanoma UK (used to be called OcuMel). It has a Facebook group and there are lots of wonderful people there who understand the journey and are a great source of information and support.

Stay strong, will be praying for you x

Thank you for the good wishes, im now organising myself for next week and wondered if anyone had any tips or advice? Im planning on downloading stuff onto a tablet including audible. Maybe some puzzle books and also some snacks. I imagine 3 or 4 days in the same room will be pretty tedious so any survival tips will be very appreciated! Thank you

I took crochet, books, puzzle books....to be honest it was quite uncomfortable so spent most of my time listening to audiobooks with my eyes closed, or watching re-runs of things I knew well so it didnt matter if I drifted off.

I got up each morning got dressed and sat in the chair then moved back to bed at night, though it was tempting to stay in bed! Especially the first morning when I was a big groggy and nauseous.

Best of luck.

How are you doing @annonymousnamechange?

Hi @Mussyy thanks for checking in. Im a week out of hospital now, had the disc in for 3 days so very pleased to get it all over and done with! The whole thing wasn't too bad, very boring mainly and uncomfortable. My eye seems fine, but my vision is still "off" so im a bit limited on doing stuff but hopefully that will pass quickly. Unfortunately my liver ultrasound showed some anomalies so im due an MRI next week to check. Im really hoping its just coincidence but im a bit oh FFS, really? So just a bit more fretting till I get the outcome. Ho hum..

I am glad you are out the otherside of the radiotherapy now - did they do a biopsy on tumour or not? Best of luck with the MRI - the waiting and uncertainty is very stressful. I wasn’t offered a liver scan - maybe because my tumour although in a tricky position threatening my sight it was quite thin in depth which seems to be where the risks are.

@GreysAnatomyMeredith- how are you getting on? Have you have your assessments?

@Mussyy I've had a very stressful five weeks waiting for my referral after the initial local hospital appointment. I had been emailing Liverpool, and after waiting a week and a half after they had received the referral I got an email back saying the consultant had looked at all my imaging and scans, including the one with dye, and that an appointment was not necessary. So, so incredibly grateful - but I still don't know what the consultant has determined beyond that they would be writing to my GP and the ophthalmologist to explain why I don't need an appointment. I don't know if it means I will need future monitoring etc or if I will still need to be seen in the future so feel both relieved and in limbo at the moment. Thank you so much for asking.

@annonymousnamechange I hope all goes well with your MRI next week, and it is just precautionary. I will be thinking of you.

I think that this might mean it’s considered benign? But will still likely require annual measurements / imaging in case anything changes?

My understanding when I went in for my day of imaging with consultation meeting at the end of the day, was that there were 4 outcomes:

benign - NFA but annual review

benign - but treatment required as lesion was big and structurally impacting optic nerve and macula and therefore vision but obviously then no risk of spread

malignant - radiation treatment required

malignant - but tumour now so
large eyeball had to be removed.

I was ecstatic to get no3 - the poor guy next to me all day was told no4.

Hi all,

I am now nearly 7 weeks post disk and I thought I would mention that my treated eye the vision is still off. Not so that it affects me normally, my brain is compensating, but if I close the other eye I can notice the vision is not so good. I also still have some redness and my eye still looks more tired than the other. But its completely pain free and I am hopeful it will return to normal eventually.

I was referred to the systemic oncology consultant at my local and told I would have liver scans, but still, 7 weeks later had no appointment. I have been offered a separate procedure for DNA testing but turned it down. I had requested it when i had my disk but the surgeon the booked was not qualified, so it was go ahead without or rebook the op (it has also been cancelled once before) so i went ahead and now cant face going back to eye drops, poor vision for another procedure.

@annonymousnamechange I really hope your MRI puts your mind at rest and its a coincidence. My Mother has recently had a scare on a liver scan, it turned out to be her statins causing some damage, she changed them and the next scan was clear. You never know what is going on in your body, but when you are going through something like this everything is a worry.

@GreysAnatomyMeredith I hope you get confirmation that monitoring at most is all you need. Sounds like a positive outcome.

Oh thats such good news @GreysAnatomyMeredith you must be so relieved, if a little frustrated with the process! Hopefully you'll get the answers you need soon. Do you check your NHS app as ive discovered letters etc on there i wasn't aware of? Might be worth a go?

I decided not to go for the biopsy (although maybe regretting that decision now!). I wss told it would make no difference to my treatment and there was a slight risk of damage to my sight so I decided it wasn't worth it. @FallenNight i can well understand not wanting further surgery and all the hassle it involves. But how frustrating you couldn't have the biopsy first time round. And how frustrating you can't get a liver scan sorted. The nurse specialists arranged the MRI for me so im back at liverpool for this. Hopefully ill be driving by then to nake life easier. Would it be worth getting in touch with yours (apologies if you've done this). Roll on next week!

@Mussyy @annonymousnamechange @FallenNight

Thanks all - yes very relieved but still not totally settled as I don't know what the lesion is or what the issue was that spooked the original ophthalmologist so much that he told me I would lose my sight and need to be seen by Liverpool within days. Unfortunately, being in Wales, the NHS app doesn't show you much at all which is frustrating, but I hope to hear soon.

That's really helpful to know the four categories - I'm assuming I will still need to be monitored.

So very frustrating to have to wait for the all clear for your liver for both of you - it must feel awful still dealing with the unknown. I hope all goes well and you know something concrete very soon.

Sorry to return to the thread, has anyone who had plaque treatment found their sight in that eye seriously deteriorated? I am noticing a significant difference in clarity of sight. With my left (untreated) eye I have near perfect vision. With my right (treated) eye I cannot easily read this message. It's about 8 weeks since my treatment. Thanks.

I am sorry to hear that. Might be worth going back for a check up. I experienced a whole series of sudden new symptoms recently as well as poor sight and went in for review. I was ‘reassured’ that it was only my predicted sight loss (as a result of radiation on optic nerve) happening now rather than over the next 12 months. This was 5 months post treatment - symptoms and rapid sight decline started a month earlier. But the good news was that they were able to see that the tumour hasn’t grown in those 5 months. I will have another 3 scans over next 18months to confirm the treatment has worked. They said my optic nerve is effectively dead now. The rapid change in eye sight is very disorienting. I am hoping when the deterioration is complete then I will just get used to it physically and emotionally. I think my brain is trying too hard right now. I am also on horrible avastin injections into the back of my eyeball - it’s an ‘off label’ procedure where it may or may not delay sight loss - I assumed that as it’s apparently not working they would stop them - but they have decided to double the frequency which makes me feel sick.

You may have some inflammation which is common and kicks in a few months after treatment and it may resolve or need treatment so I would go back to your Dr. I lost significant vision at one point and it turned out to be post op haemorrhage - so it was the blood stopping me see - this then cleared in a few days. But this recent loss has been different also weird symptoms that I wasnt expecting - pixilated/blurred patches, floaters, flashing lights, eye has become bloodshot again. But this is collateral damage from radiation rather than regrowth of tumour - so I am (trying) to be grateful for that.

Hi @FallenNight, sorry to hear that your visions deteriorated. Im 4 weeks post plaque treatment, so not really much help but I have noticed very much that my vision can vary from day to day and my eye feels more swollen and bloodshot since stopping the steroid drops. Ive also had some symptoms lessening (swirling in my peripheral vision) but developed new ones like balls of light so I im not sure what's 'normal' and whats not. And im still waiting for my liver mri results.

I dont know how it works at Moorfields but liverpool have a group of nurse specialists who are very responsive (did all the bookings in, ward visits etc). Id assume Moorfields have the same so it may be worth checking in with them if you have their details? Or phoning the dept secretary to pass a message along? I hope you get some answers soon and its nothing to worry about 🙏

Thanks @Mussyy and @annonymousnamechange I will call the nurses at Moorfield's. It does feel a bit swollen and there is a massively noticeable difference between the vision in the two eyes which I noticed less at first. I am not due back for a check up with the eye doctors for another 4 months as they said 6 months to notice if anything has happened. I do have an appointment this week at my local hospital with their systemic oncology team. I presume they are going to discuss monitoring in general and perhaps some liver scans. My surgeon wanted my to be monitored as he thought I was quite young compared to most of the people he sees.

I hope the vision returns. When I was first put forward for surgery everyone was very this is nothing to worry about and absolutely routine.

My surgeon was the one who said his priority list.
Save your life, save your eye, preserve your vision. That was more of a wake up than from anyone else. It's odd. No professional has ever used the word cancer to me. I wonder if that is to stop me worrying. It worked, I have been a bit blasé until the oncology letter came through and my vision started going wonky.

Hi @FallenNight how are you doing? Did you get anywhere with the nurses from the department? I hope youre getting some support and answers, will keep everything crossed that your sight improves. My piece of good news is my liver MRI came back clear, so I can relax till the next one

Excellent news @annonymousnamechange really glad to hear that. I have an appointment in two weeks to review the sight changes...and and ultrasound planned for shortly after to check my liver

Oh thats good youre getting somewhere @FallenNight
I'll keep everything crossed that it gives you the answers you need and its all clear. It's an absolute bugger this isn't it?

Ooh, glad Ive found this thread!
I'm currently waiting for an appointment next week to have a closer look at my eye freckle which seems to be connected to the subretinal fluid which in turn is causing vision problems

Spent this afternoon in eye casualty as my vision has deteriorated since I saw my optician last week, followed by an eye clinic appointment whose "urgent" referral came though with an appointment in August next year😱

Anyway, the doctor today was careful not to diagnose me with anything, but he did talk about the four treatment centres, so I'm assuming he thinks the freckle is a bit dodgy

Will have a proper read through the thread once my eyes are less blurry from eye drops, but wanted to drop in and say hi

Best of luck @MyVisionsComeFromSoup- I hope a referral for assessment comes through soon. Also @FallenNightI hope your review and liver scan go well for you.

I am finding the constant sunlight hard work - I knew the radiation would make my eye photo sensitive but it’s quite unpleasant. I had my second injection of Avastin into my eye last week - it wasn’t as traumatic as the first time. Everyone else having them done were very very elderly and frail in their 90s for macular degeneration - and they have both eyes done so I need to be braver. It’s such a random journey to have landed on out of nowhere.

I am also having genetic testing as I already had skin cancer - there is some link between ocular melanoma, skin cancer, renal cancer and mesothelioma (thoracic and abdominal) so looking into that.