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Just diagnosed with stage 3A Follicular Lymphoma

Jem1979
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Hi All

 

This is my first post. I have just been diagnosed with stage 3A Follicular Lymphoma and have been put

on 'watch and wait' it's been a long journey to get to this point and while I'm pleased I don't have to have treatment at the moment I'm finding it difficult to process the idea of never knowing what's ahead. I was wondering if anyone out there with similar experiences had any advice? I'm also looking for any advice/tips on how to tell my 14 year old daughter? 
 

Thanks in advance

Jo

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    Hi sorry to hear about your diagnosis. Hope you dont mind me asking how long it took you to get diagnosed and what tests and symptoms did you have

  • Offline in reply to Mandyarty

    Hi

     

    My journey started at the end of March and I was given full diagnosis yesterday. I found a lump at the top of my groin which I thought was a muscle tear so I went to the GP. GP also thought muscular so I wasn't referred for an ultrasound until about 6 weeks after this however by this point we were in lock down and I couldn't get seen on the NHS so I ended up going private because I was in so much pain (lymph node was pushing on nerves)  I then had MRI, CT Scan and Lymph Node Biopsy. Following biopsy results I was referred to Haematologist. Other than enlarged lymph nodes in three areas and fatigue I don't have symptoms. 
     

    hope this helps

    Jo 

  • Offline in reply to Jem1979

    Im going private to next week to see haematologist to get a second opinion. Its been going on for a year. Chest pain. Swollen nodes in groin and neck. Had neck biopsed was told reactive. I wish they had biopsed groin they nodes have shrunk now. They never because i had no symptoms then the itching started. So worried theve misdiagnosed me. Hopefully get answers next week.  What size were your nodes? Mine were 2cm in groin.  Where your bloods normal? Sorry for questions.. Ive not had any ct or mri scans.. 

  • Offline in reply to Mandyarty

    The node removed was 3x3 I'm not sure about the size of my others but Haematologist advised anything over 1cm in diameter was a confirmed site in my case. Getting a second opinion is the best thing you can do to help you understand what's going on. The not knowing and the waiting is the worst part. I only had bloods done yesterday so unsure of results. 

  • Offline in reply to Jem1979

    Take care hope all goes ok with bloods Tomorrow best wishes 

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