• 6 replies
  • 19 subscribers

My name is Sarah. I have been diagnosed with FL. I get my final results after all the scans and bloods to find out exactly where else it is in my body I’m not too worried and I hope it’s watch and wait

  • Hi Sarah  and a warm welcome to this corner of the Community although I am always sorry to see folks 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 a rare, incurable but treatable ‘other’ type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    I was basically on Active Monitoring (I prefer the term Active Monitoring to Watch and Wait as it’s more accurate as to what is happening) 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).

    Your bloods will most likely say nothing much about your FL but more about your general health. In all my 23+ years I have never had a blood test that highlighted anything about my Lymphoma specific but lots about my general health especially when on treatment.

    The scan will help find your Staging, but unlike most other cancers 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 just identifies where the Lymphoma was presenting in the body, what is the best treatment approach and if put on treatment, the best type of treatment fir you and for how long.

    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 - clear accurate information helps turn the noise down between the ears.

    Always here to chat and support ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello Highlander.

    thank you so much for the information you have supplied. It’s reassuring to know that I can ask questions on the forum,  as I feel a little in the dark at the moment. I get my scan results on Monday. I will certainly look at the questions to ask as I have many questions written in my folder already and I don’t want to miss anything.

    Kind Regards


  • Hi Sarah,

    I was diagnosed with low grade follicular non Hodgkin’s two weeks ago, I had PET/CT scan last Wednesday and also get my results next Monday the 20th, I’m under UCLH macmillan cancer centre in London.

    I have two swollen lymph nodes, one on the back of my neck and one under my chin.

    Im quite tired a lot and now and then come over a little nauseous and dizzy and an over tge body weakness but other than that nothing……

     I’m struggling for questions to ask the Heamotologist it sounds like your more prepared than I.

    How are you feeling? 

  • Hi  and welcome to the group.

    Do have a good look through this link Questions to ask your medical team about Lymphoma as it helps you understand the questions that you may want to be asking.

    The group is here to help you navigate this journey ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Good Morning Connorsnan

    Thankyou for your message. I’m sorry to hear your diagnosis. In answer to your question, I don’t really have any symptoms apart from terrible night sweats and hot flushes throughout the day which may also be to do with the menopause. 
    I don’t really feel tired but do have trouble sleeping throughout the night. 
    Good luck for tomorrow. I hope we can speak again on the forum?. 

  • Good morning  and  to find good up to date accurate information you may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

    They also run various Support Platforms. I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

    They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge