10 years later

FormerMember
FormerMember
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I am 71 in July this year and I had my left eyeball enucleated on Oct 4 2010 at Bart's London following a routine eye test on July 12 2010.

In the short space of time that I had and my unwillingness to make a decision at the time, my melanoma had grown further to be considered large!

I am seen by Brighton Eye hospital each year to have the socket checked and I have been having ultrasounds and blood tests twice a year.

This year, I am being seen by Oncology, Brighton in order to receive MRI scan and usual blood tests as well as socket checked.

When the melanoma was first discovered, I asked myself how I came to get this problem. Now, after being in remission for over 10 years, I wonder how I am still alive after reading all of the official stats around on this subject!

  • Hi and a very warm welcome to the online community

    Thanks very much for taking the time to tell us about your journey with eye cancer. I think the fact that you've outlived the prediction made by statistics shows just how important it is to understand that these are arrived at by looking at lots of people, but you are an individual and won't necessarily have the same outcome.

    When you have a minute, it would be great if you could copy your post into your profile as it really helps others when looking for someone with a similar diagnosis. 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.

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

  • FormerMember
    FormerMember

    I think that I have had an almost identical experience as Tony Henfrey from this forum, only his was in 2008, some 2 years or so before mine!

  • FormerMember
    FormerMember in reply to latchbrook

    Hi Latchbrook,    Thanks for the welcome to the online community! After all this time, I have almost given up worrying about anything to do with this type of cancer and I try to keep away from a lot of the websites, especially the ones that specify in detail the survival rates! Suffice to say that I live my life much as any other person, as fortunately, society does not impose any restrictions on people like me as long as the remaining eye continues to function properly! fortunately for me, this is still the case!  I would just like to state that if it had not been for Lorraine McAndrew (MacMillan) telephoning me back in September, 2010, then I probably wouldn't! be here composing this to you today! After having been through the Friday clinic at Bart's London in August 2010 and being told that I had a melanoma at the back of my eye, I then decided to stay away! Lorraine phoned me to say that doing nothing at all was not an option for this type of cancer! Subsequently, I decided to return to another Friday clinic at Bart's wherein I was told that the tumour had grown considerably! I was offered the proton treatment, but I decided then and there to take the bull by the horns as it were and go for enucleation! 

  • FormerMember
    FormerMember in reply to FormerMember

    I would advise everybody to gain access to their Patient Record from their GP practice! It has been free of charge since 2018 and is recognized as a legal document. 

    I found out in December 2020 that one of the doctors at my local GP practice, who just happened to be a partner had written a lot of unfair and totally untrue things about me based, presumably on what he had read on websites.

    Unfortunately, because this type of cancer is so close to the brain, some people, including doctors it would seem are too eager to believe that 1) you're not going to live too long, once diagnosed, and 2) some sort of senility or worse may be arriving sooner than normal.

    I've had to write many emails with lots of information in them to counter what my GP has stated on my Patient Record in order that a more balanced view can be read. You will not be successful if you try and get your GP to cancel what he or she has said, the system does not allow that to happen! However, if you do not correct your record, then somebody down the line who has access to your Patient Record will naturally assume that everything that they are reading about you is true!

    Good luck!

  • FormerMember
    FormerMember in reply to FormerMember

    11 years today exactly since I had my operation at Bart's and everything is fine!

    Thank you everyone at Bart's who made it all possible!