My Eye cancer ocular melanoma

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Hi im louise age 41. Single mum of 3 but 1 live with me. The other two are older and moved out. I was dignosed with eye Eye cancer ocular melanoma in 2020 then after lockdown of covid i went back it had got bigger and they decided to give me proton beam radiophrapy treatment in liverpool. Which starts 1st april to 5th april .i had surgery in febuary 2024 4 clips around the tumour to messure it. 19th march i have had a simulation mask made in liverpool. Im from felixstowe suffolk. Im signed off work til 15th till im better theres still along way to go possible follow up treatment after radiophrapy. ct results come bk gt 2 lumps each side of neck and 1 in liver gt be tested biopsay and mri duno wat to too heart broken im on my own with my son. Im still shocked with this all im scared.

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    Hi Louise

    I noticed that your post hadn't had any replies yet so responding to you will 'bump' it back to the top of the discussion list again.

    I'm sure some members of this forum will be along soon to share their experiences with you.

    ((hugs))

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

  • Hi Louise,

    I hope you’re doing ok?

    I too was diagnosed (age 47) and had plaque radiotherapy in January. How come it took 4 yrs for you to have treatment? (If I’ve read that right?)

    sorry to hear about the lumps in your neck and liver, try not to worry as these may only be cysts, wait and see what your MRI/biopsy says. 
    there’s a really good group you can join on Facebook, it’s called ocumel patient group, I think if you google OCUMEL UK and sign up there, you’ll be put through to the group, there’s lots of us on there and all very friendly, you’ll get loads of support and advice, so much info from people that’s going through the same thing and have been for yrs.

    take care Blush

  • Ipswich suffolk said it was a blood vessel full of fluid them covid came had no appoinments

  • Oh dear, well good luck, Liverpool is suppose to be the top place for treating the eye. 
    Hopefully you will get lots of help and reassurance, you will be given a councillor, she’s called Laura and is amazing with support and is a very knowledgeable person with our condition. 
    I am only a few months in but already it’s getting easier, it’s a really rubbish cancer but more and more options are coming through for treatment, so there is hope. 
    Hope all goes well today, good luck Four leaf clover

  • Hi Butterfly lady

    I want through the Proton Beam treatment last October. The operation was the worst part and you have been through that. The four radiation treatment's are uncomfortable for the 10 minutes or so,  they have no immediate effect on your sight. 

    Really sorry to hear about your CT Scan, lets hope the biopsies come back negative.

    Let me know how it goes. 

    Sammy163