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Ocular melanoma - Proton Beam Therapy

Astonand14
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Just about to start my journey with cancer treatments. I have a melanoma on the back of my left eye 16mm x 14mm 3.6mm high. I’m off to London on 28-12-23 for targeting clips. Really anxious about it.

Then off to Liverpool on 04-01-24 for mask fitting and first simulation then back there again for a week 14-01-24 for the proton beam therapy.

What I’m most worried about is the pain following the clip fitting because I was in a lot of pain when I was fitted with multi focal inter ocular lenses back in 2017

  • Hello Astonand14

    I'm sorry to hear about your recent diagnosis and that you're feeling so anxious ahead of your upcoming appointments. It's understandably a difficult time for you. 

    You might find it helpful to have a look through this thread that talks about some of the procedures and treatments you've mentioned. Hopefully it will give you some reassurance. 

    Do let your care team know about your concerns regarding pain management when you go for your appointment. I'm sure they will want to make sure you are as comfortable as possible and that things are well-managed. 

    Hopefully your appointment next week will go smoothly but if you'd like to chat things through with one of our nurses they are back in the office on Wednesday 27th December, 9am to 5pm on 0808 800 4040. 

    Keep in touch Astonand14 and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

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    Hi Astonand14,

    A very warm welcome to our forum, although I am sorry to hear why you're here.

    It is only natural that you are worried about all that lies ahead. The only experience I have had of this type of cancer is though that of a close friend. He had to travel to Liverpool from Scotland for the proton beam therapy. That was 6 years ago. He is now 86, still driving and doing well. He has regular check ups at the hospital.

    As far as the target clips are concerned, he says that you don't need to worry about pain with them. He never felt anything. He was pre-warned that the proton beam therapy would mean that he'd lose the sight in the eye, but would kill the tumour. It worked in respect of the tumour and he still has a little peripheral vision.

    I hope that this helps to reassure you, as you start this journey and wish you every success with the procedure.

    Just a thought - you might get more replies from people who have had this treatment, if you asked one of the monitors to change your title to Eye cancer or proton beam therapy, as this will possibly catch the attention of people with similar experience.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Excellent idea Jolamine - I have now changed the title to make it more specific and catch the attention of people with a similar experience. 

    Lucie

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    As I've also mentioned on your other post, please take a look at the Ocumel website which has lots of information regarding ocular melanoma treatment & also has a forum where you can speak to other ocular melanoma patients. Good luck.

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