Eye site loss???

Hi Sammy163 

I'm sorry to read of your diagnosis and subsequent treatment. I noticed that your post had not yet had replies. I hope you don't mind me replying to you as I have had a different type of cancer. By responding this will place your post back at the top where it may be seen by more members of the eye group. You could try a search on the site by using the eye glass at the top of the page. Best wishes for your next scans.

A x

Hi. A very good question and one I am entertaining myself as I await my own treatment. No issue with any of the literature I have around the potential impact to date albeit I am trying to err on the side of my sight will be degraded one side rather than lost, without ignoring the potential. As you ask yourself, it would be helpful to have the input of some real experiences rather than statistics. 12 months on from your treatment perhaps you're in a place to share where you're at with regard degradation?

I hope you had a positive outcome with regards to your vision. I’m new here and just wondering how people have got on. 

Well here I am in April maybe 6 months on from PBT.

Sight for me currently is holding up. Nothing noticeable in the impacted eye as yet.

In a "Be prepared for the bad but hope for the best" place at present.

Probably too early to expect noticeable change in my case.

Sorry haven't been on the forum for ages.

I was identified with choroidal  melanoma in July 2021 and treated in October 2021 with

proton beam. It was 1.5 cm and 5mm deep and 1 mm off my optic nerve. I had mixed opinions as to what my vision would be like (my consultant said I would have some vision and others nothing at all).

Well I can report I do have stable vision still and I think after a year it seemed to be a good indication of things for me, I can still see pretty well but vision is blurry and I am useless at reading the eye chart. If I stare really hard the letters come into some sort of focus ( due to having some foggy patches)  and I can sometimes read some letters better than others but only the first few rows. I find that my peripheral vision is very poor on that side where the tumour was treated and I like people to walk on my left side. Colours are faded and I am way off when trying to pick say a hair off on my clothing, I still have some eye flashing and to be honest my head has never felt quite right since. However in the scheme of things I feel my eyesight is the least of my worries

I never seem that anxious about my eye checks but more so when it is my liver Mri result time I definately suffer from scan result anxiety big time whether it is the phone call or an in person visit and I cannot say it has got any easier for me. I am just going though more checks at the moment as they have concerns about spread to my liver so I am not in the best of place at the moment. To be honest I'm totally bricking it. I can't say I like my new normal and I still feel like I have a stop/start kind of existence revolving around appointments,

This whole journey seems a waiting game … for appointments, for tests, for results, for treatment… a never ending roundabout with no way off spinning from one stage to another. I am 
Sorry to hear there is concern about your liver, I do hope you get answers quickly with options to treat it well. 

Thank you Lou....I hope you are fairing well. Yes it is a constant stream of appointments (often being cancelled) and the killer 5 week wait for Mri results I seem to find myself in.

I’m doing OK thanks. ‘survivor guilt’ as my son calls it as I had a ‘low risk’ result whilst my sister is has been through liver mets (cleared) and now brain mets; but also that distant fear of what  the future holds. I’ve been lucky that when appts have been cancelled, I’ve emailed the nurse specialists and got an earlier one than the first, it’s an odd system. Is it the long 5week wait you are in now? 

A quick thanks for your taking the time in amongst all the concerns you have going on at present awaiting scan results.

4WIW my most recent encounter with the medics was last week and simply around a potential course of treatment to improve upon what vision may be retained in the future. It has its own risks but as I am still in a place of hoping for as good as possible as regards sight, I will be following that line.

There were some examination aspects as may be expected to monitor how treatment has gone so far and status of the eye. The usual sigh of relief that things at "ground zero" haven't worsened physically, for now at least. The next MRI though isn't that far off.

You're current experience though is the place none I suppose want to be. I'll keep you in my thoughts for a good outcome.

BR

D

Not sure about "survivors" guilt in my case, but definitely I feel somewhat fraudulent as to all intent and purpose the lack of any current impact on my sight and general health gives the false sense of anything being amiss at all.

Time will tell

D