New diagnosis

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Hello,

I am newly diagnosed with low grade FL, 5 days ago.  Having my. PET CT scan on Thursday, all very daunting and still trying to process my diagnosis.  I understand the results of PET scan will determine staging and decision on whether I receive treatment or not  

I have lots of questions going round in my head and also get a bit weepy at times as I am  feeling rather scared and daunted by it all  

Karen 

  • Hi Karen   and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.

    I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with another type of Low-grade non-Hodgkin lymphoma…….. most low grade NHLs are incurable but treatable….. my type is rather rare (7 in a million) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    It takes time to get your head round receiving a cancer diagnosis….. and more so Lymphoma…… as there are actually over 60 types and sub-types of Lymphoma and this brings the challenges of all the different treatment apricots required.

    Lymphoma is actually the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available……. but at the same time a lot of people have never heard of Lymphoma.

    Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

    Staging in Lymphomas identifies

    1) Where the Lymphoma is presenting in the body (it can be anywhere)

    2) What is the best treatment approach and best treatment type for your presentation

    3) How long your treatment needs to be.

    For some types of slow growing Low-grade non-Hodgkin lymphomas like your FL you may be put on what is called Active Monitoring (I prefer the term Active Monitoring to Watch and Wait as it’s more accurate as to what is happening)

    I was basically on Active Monitoring for over 14 years before I had any full on treatments (but my type of low grade NHL was ‘on’ my skin so was treated as though I had Psoriasis).

    You may want to have a look at this link Questions to ask your medical team about Lymphoma as it will help you ask the right questions once you meet up with a consultant - clear accurate information helps turn the noise down between the ears.

    Always around to chat and answer your questions ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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