eye melanoma

Hi JudySt and a very warm welcome to the online community

Whilst I don't know very much about ocular melanoma I noticed that your post had gone unanswered so I thought I'd see what I could do.

I'm sorry to hear that you've been having panic attacks since you've been diagnosed. I was diagnosed with malignant melanoma (the skin cancer variety) just coming up to 3 years ago now so can remember only too well how I felt. Have you been to see your GP about your panic attacks? I'm sure they'd be able to suggest something to help you like talking therapies, etc.

I suppose it's good that this group is rather quiet as it means that not many people have this type of cancer. However, the downside is that you might not get many responses so I have found this information for you about ocular melanoma which tells you about treatment, etc. 

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Sending you a supportive ((hug))

Hi Judy, I had ocular melanoma dealt with 30 years ago so hope that gives you some idea of the possibility of life continuing afterwards. Mine was a very large melanoma. As yours is smaller you will be given more treatment options than me. Also things have moved on in the last 30 years and they know and can do so much more. Good luck.

Hi JudySt

Its totally understandable to feel panicked, but wanted to give you some reassurance by explaining my experience to date. 

I was diagnosed with a ocular melanoma in November last year, thankfully it was caught early and in January of this year I had radioactive plaque treatement at moorefields hospital. 

Following this treatement I was able to go back to work within two weeks and everything since feels very 'normal'. So far, I haven't lost any of my vision and I am having biannual abdominal ultra scans which have all been clear. I have been told I will have to have the scans for the rest of my life, this is precautionary measure to monitor any potential spread.

It has been 8 months since I was treatment and I am due to go back to see if its been effective very shortly. During these last 8 months I have felt fine and day to day life hasn't changed. 

I know this is a lot to take in, but my advice would be to write down any questions your have and make sure you ask your consultant at your next appointment.

Good luck xxx

Good morning JudySt,

My ocular melanoma history is very similar to Kerry007's but I was advised to go for Proton beam therapy.  All is going well but for one hitch, my eye has produced fluid internally and this has lifted the retina distorting my vision a tad. 

To reduce the fluid level I've had a steroid implant inserted, occasionally I can see the 'twiglet' to the top of my field of vision.  It's a little unnerving but acceptable.

Very best wishes with your "eye job".  Cheers Tony.

For those that might be interested there was a recent article on proton beam therapy:

https://www.bbc.co.uk/news/amp/technology-48950937

Might help those preparing for this treatment 

Good morning Kerry007, sorry but I couldn't track it down.  Could you be more specific?  Cheers,  Tony.

Hi Tony

The link is in my post, just click on it and it should load. Alternatively Google 'BBC news proton beam therapy' and the same article pops up.

Kerry

Good morning Kerry, got it.  I'll read it just to make sure they have all the facts correct!

Cheers,  Tony.

Dear JudySt

It is understandably a very scary time when you are first diagnosed with an ocular melanoma.  My hubby Steve was diagnosed the day after Boxing Day in 2012.

It was a stressful time and he had an operation to put in markers in his eye and then had a week's treatment of Proton Beam therapy at Liverpool Eye hospital in early 2013.

Can I just say the treatment given is amazing!!! and very successful. I too worried that there could be more to it than just an ocular melanoma but in every case I've come across (although quite a rare cancer) it is not.

Think we are so aware of our vision and if it "goes off or distorts" it is very disturbing.

So six years on at 62 he has now retired and become a fantastic house husband, for him the ocular melanoma was right in the centre of his optinc nerve, so the Proton Beam treatment was 100% sucessful but unfortunately due to it's location he did lose the vision in his left eye.  But to be honest he can still see better with his right eye than I see with my two eyes.

Stay positive and pace your way through the treatment and you will find that life does settle down again. All good wishes for the future.  Lesley Wells x

Thank you so much for sharing this with me! 

I now am in my third week after radium plaque surgery ! My vision in my left eye is distorted but I won’t know how it will be for a while, as the treatment with radiation keeps working for months after the plaque removal ! My melanoma is choroidal so the Brachytherapy was the best treatment ! The tumour is very early stage so I have a good prognosis and my liver scan was clear ! Good to hear your husband is doing well x thank you once again Kelly ! Kindest regards to your hubby also xx