New here with Iris Melanoma

Hi again Janimac and I'm glad to see you've joined the group after posting in New to the Community.

I haven't had this type of cancer, so can't help with your question

Janimac said:

is there a likelihood that it will start to grow again?

but I'm sure some of the group members will be along soon to share their experiences with you.

Thanks for your reply.

Hi, how are you getting on?

My local hospital have referred me to Moorfields in London. They feel that the choroidal freckle has turned hence why I have fluid. I am terrified which I'm sure you relate to. It's not to read up about it, they never give you long. However someone on here I think the person who replied to you. Said it had been 12 years. I'm 57 and still have so much to do and see. I've not had it told to me yet but I'm devastated already. 

Take care Lisa

Good Afternoon

I have just seen your post. I was diagnosed with an eye freckle initially on a watch and see. After a year i was formally diagnosed with ocular melanoma. I had surgery to prepare for proton beam therapy at Moorfields before having treatment at Clatterbridge cancer centre i. Liverpool. I have 6 monthly liver mri to check that it has not spread as well as regular eye checks and now monthly eye injections. i have very little sight in my eye but this only due to the tumour touching my optic nerve. Happy to answer any questions that you might have. take care 

Hi, thank you for responding.

It's all very scary isn't it. It sounds like there's alot going on for you.

It's not something that you can put behind you with monthly injections. 

I understand the need for the checks etc and thank God for those. 

I feel like it's all over it's very scary as you know. I can't sleep or stop crying. 

I need to find some strength as it's not helping.

Best of luck to you. X

First can I offer my sympathy and indeed empathy.

I'm 3 months on from diagnosis, all the initial steps in treatment have occurred and scans for secondaries have shown clear. Those steps have closed off a lot of "what if?"s (fears) and concerns in my case have eased back a lot, but I doubt will ever fully go.

It's an easy thing to write albeit a difficult thing to enact, but I try and be a "pragmatic" sort and be neither glass half full or indeed empty. I like a pint, so take in the whole glass. There are minuses, but with knowledge to come, there will be positives to temper the negative

There is indeed a lot of information that floats to the top of Google searches and the key thing in all of the "bad stats" is the stage the cancers reported on are at.

The other point is that all the figures quoted tend to "average". "Average" when it comes to rare things, and this is a rare type, tends to be distorted a lot by the sample size, comparatively few cases, not helped by low awareness, few if any symptoms, often later detection, spread and all sorts.

I could write more, but I wouldn't want to give false hope. There are hopes to look for and aim at however. You'll be in a better place to assess your own situation, which will be yours and yours alone, after visiting Moorfield's.

As you get more information specific to your case, you can "own the glass" that bit better, each step along the way.

Good luck

Good afternoon Derek,

Thank you for taking the time to reply.

I can tell you are a very wise gentleman. Those were wise words and quite calming. I will probably read them over again no doubt. I understand that my case if this is the outcome would be different. I'm trying to prepare for the worst but hugely hoping 2 and 2 is adding up wrong. 

I've had all sort said to me because no one really knows what to say. That's why I joined this group. I joined it 7 years for my husband's illness. 

I found it really helpful then but of course when it's you it's harder to deal with.

Thank you once again and I wish you well.

Lisa