Newly diagnosed intra ocular lymphoma awaiting MRI

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  1. Hello everyone i have auto immune disease birdshot uveitis. I had a vitreous biopsy on 13th October and saw my consultant on 23rd October who told me the results of the biopsy the cells were abnormal  and that I had intra ocular lymphoma and that an urgent MRI referral had been requested on 22nd October and that my case would be discussed at MDT the following week. I have chased  with my consultant and was told that they were waiting on the slides biopsy from Moorfields hospital before plan was agreed and I would be contacted by one of the heamo oncology team this hasn’t happened despite my consultant chasing. I have had no date for MRI. I feel very powerless not knowing what prognosis/treatment plan is. Is this normal I am struggling mentally with the waiting and the lack of information.
  • Hi  and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups. 

    I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.

    The time it is taking to get a clear diagnosis is actually not that unusual as it can take time for the pathology to come up with the information…… and until the main parts are in place this days a treatment plan

    There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but once you know your exact type, these are our main Lymphoma groups below…..

    Hodgkin's Lymphoma

    General Non Hodgkin's Lymphoma

    Follicular Lymphoma

    Diffuse Large B-Cell Lymphoma

    Mantel Cell Lymphoma

    T-cell lymphomas

    CLL, SLL and HCL

    These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    Have a look at the group list above…… then click on the link that best fits your type of Lymphoma……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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