Newly diagnosed with follicular lymphoma

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Hello everyone,  I have just been diagnosed with follicular lymphoma today. Feeling very emotional and frightened.  I'm low grade and on watch and wait . Any advice would be much appreciated to help me with all what's going through my head at the moment. 

  • Hi  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 (FL) but I was diagnosed way back in 1999 with another type of Low-grade non-Hodgkin lymphoma. But my type is rather rare……I eventually reached Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    FL is one of the most common types of low grade NHL so this is actually a good thing as there are lots of good treatments available to treat this when required.

    I was on Active Monitoring (Watch and Wait)  for over 14 years before I required treatment and this can often happen a lot for low grade Lymphomas.

    When Active Monitoring is suggested for you, it means it is in your best interests to keep an eye on your lymphoma and to save other treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

    Its a lot to get your head around but the more you talk with people and learn more about FL the better you can deal with the noise between your ears.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike thank you for your reply,  and your advice. Don't really know what to say at the moment, 

    All a big shock to me and my family at the moment 

    And not knowing what to expect.  My specialist and team are lovely and explained everything to me and my husband.  But in a very anxious person to start with so you can imagine what I have had going through my mind.

  • As I said it ms all about getting control of the space between your ears……. and clear accurate information is important….. don’t do random Google searches use the links I have given you and keep talking n here as this helps you unpack the weight…… we have all been where you are.

    I was told away back 23 years ago that being diagnosed with one of these types of Low Grade Lymphomas was like being diagnosed with a life long chronic health condition……. but the big difference between Lymphoma and other chronic health conditions is that the rhythm of treatment through the years means that you can have periods of remission and no treatments……. other chronic conditions tend to be degenerative and do not have the treatment options that Lymphomas have.

    During my first 12 years on Active Monitoring I was actually living a normal-ish life teaching a full time table in a demanding University Teaching role until I retired ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you so much , will keep you updated on how I'm going on if that's OK. X

  • Hi..I was on watch and wait for 5 years after my diagnosis of NHL and had regular blood checks during that time.  I felt well and got on with life and only thought about it when I went for bloods tests...if you are well in yourself..try and get your positive place. I was told that they dont treat until they really have to and you will im sure be regularly monitored.  And as Mike says FL is a treatable cancer and it may be sometime hence, before that happens.  Hope you are well..keep us informed. 

  • Thank you so much  Glann yours and Mike's experiences are really helping me to get my head around this. I will keep checking in with you both . 

  • Hi there was you on watch and wait along time , have you had any treatment yet. Sorry to ask , but feeling a bit anxious today. Had a good day yesterday till the evening came and the anxiety set in .

  • Hi. Yes I was on watch and wait for over 5 years...until late 2022...finished treatment on 17th Feb just waiting to hear re maintenance end of month.  Are you on watch and wait? If so don't worry you will i am sure be kept an eye on and always check in with your team if u have concerns. I am doing well. I never thought about Lymphoma on watch and wait I went for regular check ups etc and got on with my life..travelling school runs etc..but everyone is different as we know. I am told they do not treat unless absolutely necessary...keep yourself well.