Diagnosed yesterday with ocular melanoma

  • 2 replies
  • 12 subscribers

I'm Alison and I'm 51 and yesterday after a whirlwind few weeks was finally diagnosed with ocular melanoma and feel like my life has been turned upside down.  

Its quite an aggressive form and the two options of treatment I was given as proton beam therapy but due to the size of it this may not work so the only other option is to have the eye removed, which at the moment I'm trying to get my head round as I can't comprehend it.

The eye sight in the affect eye is perfect but it really does need to come out.  

The doctors and staff at Moorfields yesterday were amazing and telling me everything I need to know.  Treatment won't be done until end of January beginning of February, but at the moment I can't hold it together for more than 10 mins.

  • Hi and a very warm welcome to the online community

    I had the skin version of melanoma but can totally understand how you're feeling at the moment. I found the best way of taking my mind off my diagnosis, at least for a while, was to concentrate on doing things that I enjoyed. Do you have any hobbies or activities that you like doing as now would be a good time to spoil yourself and say s*d the housework I'm spending the day doing....?

    I have had a look in the group for other people who have had an enucleation, the medical term for removal of the eye, and found these posts which you might like to have a look through.

    I'm also 'tagging' into my reply to you as her husband had this procedure recently and hopefully she'll be able to share her husband's experience with you.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.


    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi Alison 

    I'm sorry you are where you are. As latchbrook mentioned, my hubby has the same diagnosis and, like you, was recommended to only consider enucleation due to tumour size. He had his op at Moorfields 6 days ago. We are now waiting for follow up CT and MRI scans at our local hospital. Please feel free to message me with any questions, if I can help make this any less scary for you I'd be happy to. Big hugs x