Just been told I have choroidal melanoma - advice please

[marymungomidge]

Hi everyone. Feeling rather stunned. Went to get an eye check up to see if I need new reading glasses - the optometrist did various tests and told me he thinks I have choroidal melanoma. I've seen his report and discussed it with him - I have a shadow on one eye, in the choroid. It has diffuse edges and lipfuscin, and was not there at the previous eye exam three years ago. So. I have a referral to an opthalmologist this Saturday. The optometrist couldn't dilate my eye and I don't know what size the shadow is, but I guess I'll find out more on Saturday. I've been reading everything I can find - choroidal melanoma looks like a complete swine of a cancer - 50% survival rate. I have had this info for a few days and am coming to terms with it slowly, and think I will be ok in myself. But - my daughter, who is 24, lives with me. I'm a single parent and we are very close. She is ill herself and unable to work (I work full time) - she has very severe depression and anxiety and is under a psychiatrist, and she also has CFS, TMJ and a damaged knee that limits her mobility. She is beautiful and bright (she got a distinction in her MA, I'm very proud of her). She is incredibly socially isolated and basically only sees me. She is very, very emotionally dependent on me at present - she has exceptionally low self-esteem and barely leaves the house. This news is going to destroy her. I am so worried about the impact it will have on her. I guess I'm posting this in the hope that someone can give me advice - about the choroidal melanoma, and about how best to break the news to my daugher and how to support her afterwards. Thank you.

Sorry I have no advice to give just sympathy for an incredibly difficult situation. What is the plan/hope for your Dd? And what is the treatment plan for you?

Hi, Im an ophthalmologist.
Please don't make any plans until you are seen by an ophthalmologist. The optometrist may suspect a melanoma but cannot make the diagnosis. If your pupils were not dilated, then it is difficult to fully assess the back of the eye. Was the optometrist's suspicion based on a photograph? Its tricky to be certain of liposfuscin without other imaging. When you are seen at the hospital you will have numerous other investigations and tests. Please wait until you are certain of a diagnosis before telling your daughter. If, worst case scenario, it is a CM, then there are excellent regional centres and different treatment options. I know it will be an anxious time, but you will be seen promptly and have an answer soon. Best wishes to you.

No advice here, but I see you've had some good advice above. Good luck, I hope it all works out well for you.

Thank you for your messages - and, pinkhibiscus, for your very sensible advice, which I will follow. I think the optometrist's concern was based on a photo I'd just had taken by his assistant. He then looked quite worried and did some further examination - I'm not sure exactly what -but that's when he said he thought it was a melanoma and he needed to refer me. He said he could see lipofuscin but wasn't able to dilate my eye - something to do with the angle or shape of my eye, I'm not quite sure. Is lipofuscin always a sign of malignancy? From what I can gather online, it seems it mostly is, but not always.The shadow is at the top of my eye, towards the back. Sorry for all these questions! I guess I'll get a chance to talk them over with the opthalmologist in a few days, but I can't sleep so am on here looking for information. Thanks again to those who have answered - it helps a lot.

This will be the longest week of your life - please try and keep off the internet (my hubby has stage 4 lung cancer - I spent days going over every single thing I could read) so I know this is hard.

Im typing on my phone so excuse any typos. So sorry you are having such a difficult time. I will try to answer your questions.
Lipofuscin, if present, is a risk factor for malignancy but at the moment you cannot be certain it is present. It is difficult to be certain about lipofuscin from a photo taken through an undilated pupil. There are so many other clinical features to be considered before a CM diagnosis is made. At the hospital, your pupil will be dilated. Your eye will be examined carefully and you see likely to have more imaging and scans. Its easy for me to say, but please try not to dwell on it too much. So far you do not have a confirmed diagnosis and it may very well be a false alarm. I hope you managed to get some rest. Good luck and best wishes to you.

Thank you, both, for more good advice! I scared myself silly all night online, where the word I saw most frequently connected with the survival rates for CM was 'dismal' :( I will stop looking, for now. Apart from last night's panic, I'm trying to strike a balance between not getting too much scary info, and making sure I'm well-informed for Saturday in case the news is bad and I have to think quickly about how to look after my daughter. So, though I'll try my best to put all of this out of my head till Saturday (you're right, notapizzaeater, will seem a very long time), it would be good also to know where sources of support are for family members, and advice on helping them deal with bad news, if need be. I guess I'm trying to get my heeby-jeebies aired now, so that I can be strong for my daughter, who will be with me on Saturday, if there's a need. I know I'm lucky that she's not a small child, but she is intensely vulnerable.
No sleep, and work beckons, so I will drink some strong coffee, put on a ton of make-up to cover the eye-bags, and get going! I hope you all have good days. Thanks again.

Can you take a friend or family member to the appointment to write things down so you remember?

Hi CrimsonCattery, my daughter offered to come with me, which is partly why I want to have thought through very thoroughly, before Saturday, how I will break it to her, if the bad news is confirmed. I'm trying to find out as much as possible beforehand, so I'm well-armed with questions - and answers, to an extent - been checking out the Liverpool Ocular Oncology site, which has good factual information and is not too alarmist. I'll draw a line under my research tomorrow, and note down questions before I go. Then I want to focus on staying level and positive and thinking through the best way to manage it with my daughter. I think I'll be ok taking my own notes, as I'd rather she didn't come in the actual room with me. But who knows - my mind might stop working, I guess. In which case, I'll record the conversation on my iphone, if the opthalmologist agrees. My brain is going into overdrive. But, despite no sleep, I got through today at work . Onwards and upwards. If anyone has any experience of breaking news like this to a (vulnerable) adult child, I'd be interested to hear about it. Thanks very much to everyone who is messaging me - it really does make it feel like I'm less alone with this. So much appreciated.

We had to break the news to our then 16 yr old ASD, anxious child. We was very factual, no fluffy ness, answered any questions - tbh he took it better than we ever could have hoped for but it's hard for him to process as DH whilst terminal looks so bloody healthy !

Will your daughter be supporting you at the appointment or will you be supporting her? Is there anyone else who can go with you who would be there for you?

I can't tell you how grateful I am that you lovely people are helping me through this. It's extremely kind of you to make time to reach out to someone in this way and I just wanted to say how much it is helping me. Notapizzaeater, thanks for sharing your experience. StartupRepair - well, just my daughter is coming. She offered and I agreed before I started reading about choroidal melanoma and realised how bad it could be. I'm trying to get myself to a stable state this week, so that I can make sure she's ok on Saturday. Tbh, I am fairly ok in myself - but my huge fear is that my daughter will not cope - it's when I think of her future on her own (which is idiotic to think about, I know) that I just can't hold it together.

How did your appointment go?

I hope you and your daughter are ok and the appointment went ok today 💐

I hope that things were ok at your appointment? I have a child who is vulnerable so I understand your thoughts.

OP has updated, not news we all wanted. :(
www.mumsnet.com/Talk/_chat/3772430-Please-give-me-some-moral-support

Hello all - thank you for your continued support and messages on this thread - I've continued the conversation on the link lljkk kindly shared above: www.mumsnet.com/Talk/_chat/3772430-Please-give-me-some-moral-support
xxx