Hello I'm new here

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Hi, I had a phone call from the eye surgeon this afternoon to say that the biopsy results from the vitrectomy I had on 16 May shows I have intra-ocular lymphoma. As it's the long bank holiday,  I'm waiting until next week to hear about an oncology appointment for a full body check to see if its spread anywhere else. I live on my own so have no one here to talk it all over with. Lymphoma was on the 'possibles ' list with the condition I have (Uveitis). Anyone in this forum have this type of Lymphoma?

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that you have recently been diagnosed with intraocular lymphoma and I can imagine it must be very hard not having anyone to talk to about this.

    I've had a look in the group for past threads which mention this type of cancer but drawn a blank I'm afraid. I'm 'tagging' my fellow Community Champion  into this post as he looks after the various lymphoma groups within the community and he may know of someone who has this.

    Even if there's no one in the group with this type of eye cancer you could still join in with any existing conversations as we all understand what it's like to be diagnosed with cancer.

    Do pop back and let us know how your scan goes.

    x

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

  • Hi  I see my friend  has tagged me in to your post - am Mike  and look after our many Lymphoma Groups.

    I have talked with a good number of folks over my 5 years on this Community and on another Lymphoma specific support platform who have had various eye involvement with Non Hodgkin’s Lymphoma (NHL).

    There are over 60 different types and subtypes of Lymphoma so great care needs to be taken to get a very clear diagnosis and staging.

    NHLs are often treated rather differently compared to a solid tumour cancer. Being a blood cancer the whole body needs to be looked at as in simple terms - where our blood and lymphatic systems flows so can cancer cells.

    We do have our general Non-Hodgkin lymphoma group where you may want join and post as well as you may well be able to connect with some of the folks who have had the same condition in the past.

    I will look out for you the the NHL group.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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