Paediatric type follicular lymphoma

FormerMember
FormerMember
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Hi everyone,

1 year ago I noticed a swollen lymp node on my neck so I went to my GP. She told me that it doesn't seem to be something to worry about but she will book me to do an ultrasound. Than ultrasound never happend obviously because of covid. So I had to wait 9 months worrying about that lymph node until my first ultrasound and then my first biopsy. After 1.5 month I had a call from the ENT clinic told me that the results from the biopsy didn't show something to look like I have lymphoma so they booked an appointment for me after 3 months to see me again. I thought, ok I'm fine, I don't have to worry anymore. After 1 week I got again a phonecall from the ENT doctor said that the lymphoma team saw the results from the biopsy and are inconclusive so they want to remove the lymph node to do another biopsy. I did the surgery and then I waited for another 1.5 month to get the results. Paediatric type of follicular lymphoma. Now my doctor said that it is a low grade, but I'm the oldest patient that he ever had with that type as that type appears on children or teenagers and I'm 31.

He told me that I have 2 options wait and watch or radiotherapy.

The Pet CT showed that I have something under my armpit, so I had another biopsy and still waiting for the results.

My next appointment is this Wednesday when I will have to decide what I want to do. And it is so difficult..

I keep changing my mind all the time.. the doctor told me that if I was younger he would wait but now he can't be sure..

So sorry for my big post, I just feel so lost..

  • Hi  and welcome to this corner of the Community.

    This is a tricky one. Although I had a different type of Low Grade Skin NHL I was told Active Monitoring (Watch & Wait) was the way forward for me.

    However I did have to have skin treatments as my skin looked like I had bad Psoriasis. But my consultant checked me over every 6 months, CT every year and it took 14 years before we had to use the big guns (Chemo, Radiotherapy and Stem Cell Transplants).

    Apart from my skin treatments not much changed over those first 14 years, my Lymph-nodes did wax and wain over these early years but not sufficiently to pull out the big treatments.

    His words were “We will keep the full on treatments back until they are needed and will do the best job - we can only use a certain amount of each treatment in your life time”

    I trusted my various consultants and went with their advice, I am now 21+ years on from my first diagnosis and doing great.

    Some searching questions about the positives and negatives of pressing the green button at this point in time.

    Some helpful Active Monitoring information on the Lymphoma Action site, a small UK Lymphoma Charity have lots of information and run regular online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service

    lymphoma-action.org.uk/.../LYM0233WatchWaitBk2018ed1.pdf

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Thanks for sharing and for your reply.

    All I'm doing is reading  and searching about treatments, side effects to be ready for my next appointment. The most difficult part for me at the moment is that the tests and the results that I'm expecting haven't finished yet. So I can't decide.

    Hopefully on Wednesday I will have everything that I need to go through with the best treatment for me.