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.

Hi @MyVisionsComeFromSoup welcome to the club no one wants to join! I hope you either got your appointment quickly, or better still news that its not needed. Which is your local centre?
Yes @Mussyy ive found to sun hard work as well. Probably not helped by returning to work on a tiny laptop so feeling my muscle pulling and eye aching. Hopefully it will be helped by the bigger screen im picking up today.

Hi All, I've had a check at moorfields as my vision was getting more.amd more blurred. Good news the tumor has shrunk a very little so that's excellent progress. Vision may well be permanently damaged but should be correctable using glasses and they suggested eye drops as the eye may be dry, which makes it blurry. Just waiting for a scan appointment now. But so far good news for me.

I'm also finding I'm wearing sun glasses a.lot.kore now

Oh thats brilliant news @FallenNight! What a relief, hope the positive news continues

Local hospital eye clinic has just referred me to Moorfields, the naevus is about 5-6mm, but flat, no orange spots, but there's sub retinal fluid which has doubled in the past two weeks.

So, urgent referral to see what the specialists say.

It's really early on though, so the consultant today was hopeful it can be dealt with fairly easily. Had an eye ultrasound which was weird, you don't realise how squishy your eyeball actually is!

Hand hold for you @MyVisionsComeFromSoup- sorry that you have to go through this - hope the various experiences of others on this thread can give you a little anchor in what are very uncertain times. Best of luck to you. @FallenNighthave you had any update on your scan?

Ugh, turns out the local hospital didn't make the referral properly (forgot to add the scans and photos
etc), so Moorfields rejected the referral and asked them to make it again. We spent hours today ringing round different hospitals and departments to try and work out what was going on (I'd have given up much earlier but DD was determined hospital admin wasn't going to beat her!)

So still in limbo with my vision getting worse (as presumably theres more and more fluid)

I am sorry to hear this and I hope it doesn’t put you to the back of the queue again. I suspect they have held your place and once the scans are in place they will give you an appointment. You can call Moorfields Oncology appointments directly and even though it’s an admin person they can flag the issue directly to the clinical team and expedite your appointment if needed. They have all been really helpful with me throughout.

I expect you know to go to A&E immediately if you have a change of symptoms which might indicate a detached retina (increase in floaters, flashing lights, black curtain across the field of vision) MF have their own 24/7 eye A&E if you are nearby as do some other hospitals in the SE (eg Windsor) which are better to go to as you often get sent to one anyway.

@FallenNight- how are you getting on?

My sight in my treated eye is failing fast which is disorienting and I have been contacted for genetics investigation as I have already had skin cancer and there may be a link.

Hi @Mussyy when I had my procedure they said the genetic testing had to be done within a small time window of the radiation (before the tumor is hopefully destroyed) I hope that you get the low risk result.

I'm sorry about your vision. Mine seems to have leveled off now. It is significantly worse in my treated eye. I went back and they said this is quite normal and unfortunate but better than allowing the tumor to grow. I'm going to the opticians soon and will get some glasses to help. I wear them for computer work already but at a very low prescription. I guess now I'll just have a stronger prescription in one eye than the other. I expect further determination but at a slower rate than now. I was told to buy and use a general dry eye drops as that sometimes helps.

All the best for your testing.

Good luck with the admin @MyVisionsComeFromSoup I had a follow up call this week about the results of my liver scan.....only the urgent referral had not been processed so I haven't had it yet 🙄

The consultants secretary has been on annual leave this week (which is why i think nothing has been actioned), but I may get a call back from his colleague tomorrow (assuming she's at work) so I can moan about the shit admin.

My biggest concern really at the moment is that my "good" eye is my most short sighted one (currently -11.5 for glasses) so I feel it's going have to work overtime, if there's a likelihood the vision in the bad eye gets worse. Just have to deal with it if/when it happens I suppose

Fingers crossed for everyone

Well, after total radio silence from the hospital, I did a corker of an email to PALS yesterday, and got a phone call today from Liverpool (not Moorfields, but at this point I don't care) offering an appointment on Monday!

I am now the designated "email of complaint" person at work 😂

Well done. A good complaint email is a fine thing. Hope everything goes smoothly now.

Well done @MyVisionsComeFromSoup glad everything's moving for you. My experience of Liverpool is that once youre in their system it's pretty efficient so hope you have the same experience. Keep us posted