Just been diagnosed with ocular melanoma

FormerMember
FormerMember
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Hi all,

I’m a 26 year old female who has just been diagnosed with ocular melanoma. I feel ill informed, concerned and alone.

I don’t even know where to start. 

  • FormerMember
    FormerMember

    Hi,

    I was diagnosed in December 2019 and had my eye removed in an operation in January  2020. I'm now waiting for my prosthetic eye and the biopsy results from the removal of the cancer.

    It's a stressfull time  and theres not much support out there to have face to face contact.

    If I can give you any help or advice then I'm here.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Emma,

    Thank you so much for taking the time to reply to me! 
    I sincerely hope that are are adjusting to the best of your ability and I send my regards. You’re right, it certainly is a stressful time and it seems the rarity of this cancer makes the support quite limited. 

    Are you in the UK? What types of support did you use, other than this website? Did you struggle with friends/family as this is not well known? My case seems that others around me aren’t taking it as seriously as I would like, as it isn’t say breast or lung cancer. I feel put down and I’m really struggling to connect or get some understanding. 

    Thanks again for taking the time to respond to me x

  • There's another website called OcuMel UK which you might find helpful. They are a charity and have lots of information about treatments and so on. Do you know what treatment they are suggesting? There are several, and losing the eye completely is no longer the main one.

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for the above response,  friends and family have been great and theres been lots of support, but it's good to chat with people whom have or are going through it themselves, and that's the type of support that I've been looking for, but hadn't found until now. 

    I get what you are saying about the unknown and its not one of the more well known cancers, and due to this some may find its not that bad, but to us going through this, it can feel overwhelming and hellish. 

    I do live in the UK and my specialist nurse is great, but they have many patients so  its  not like their there just for me. I struggled with not being able to connect with people who understand,  as well as adapting to just one eye and the journey is not over, as theres the biopsy results still to come Scream

    you take care and I'm here if you need to chat x