Newly diagnosed with follicular lymphoma

Hi,sorry for the long story,discovered swollen lymphnodes on one side of my neck before Christmas,my GP sent me for an ultrasound and they said they were concerned over the size of them and sent me to ENT for a biopsy. Had an appointment 2 days ago and they told me that I have follicular lymphoma. To say I was floored was an understatement,think I had myself convinced they weren’t going to find anything.Am still bursting into tears even thinking about it all. They are sending me for a CT and a PET scan and are moving me from ENT to Haematology so don’t have any info on what treatment etc they plan on doing yet but I’m really concerned as what started out as one lump I now have several in the same area. They are my only symptom so far.
I have suffered with 2 different unprovoked PE’s so I’m on warfarin for that and I have Rheumatoid arthritis and am on Methotrexate and other meds for this(yes am a total crock🙈!). Has anyone else been on Methotrexte with FL,was wondering will they get me to stop taking it? Apologies for such a long winded post.


Oh @Lea a great big welcome to our forum, you are not alone now.
Your post sounds as if you are really floored.
I was in shock for a long while after my diagnosis and felt in a bubble with the world going on as normal around me.
I was bursting into tears for absolutely ages and the saying is ‘better out than in’.
Personally, and not medically, I think it is better not to hold things in medically.
I don’t think you are a total crock, 'cose if you are so am I !!!
I think we are all complex, special beings with unique medical histories which is why only our medical teams can advise us medically.
However I have learnt over the 20 yrs since my diagnosis that it is my responsibility to remind individual consultants (GP’s, dentist, opticians etc,) of other conditions and medications I am on sometimes.
Now is your opportunity to write down all your fears, thoughts, feelings, practicalities etc.
No question is a silly question
The Blood Cancer UK support line is there for you on 0808 2080 888 if you would like to talk to them.
Please do let us know how you are doing and I look forward to hearing more about you.
Be really kind to yourself and please do keep posting.

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Hi @Lea,
I do hope you are okay today? Hearing you have a blood cancer will have been a huge shock for you so it is no wonder you are still very much understanding how to feel and what this means for you.
It sounds like the transfer of care to haematology is a positive step and your questions around methotrexate will be a really good one to ask your haematology consultant when you meet them. It is very common for people newly diagnosed to already live with other health conditions which may require treatment which often just remains unchanged or unaffected. Your consultant both in haematology and rheumatology will be able to reassure you about this.

Can i ask, were you given any information around Follicular Lymphoma when you were diagnosed?

As you may have read by now Follicular Lymphoma is as slow growing blood cancer which means, it doesn’t always need treatment. Often it will only require active monitoring ( watch & wait) by blood tests and check ups from your haematology team.

The CT & PET scan will help your haematology team decide if you do need treatment what course they will take. You can read up more about treatment phases for FL here- Follicular lymphoma treatment | Blood Cancer UK.

There are many people active within our forum who also have a diagnosis of FL and i’m sure you will be very well supported. However, we do not want you struggling & worrying alone, so should you need to talk things through, please don’t hesitate to call us on our helpline as we would love to support you in any way we can- Blood cancer information and support by phone and email | Blood Cancer UK.

Take good care, Lauran


Thanks so much Erica,I appreciate the reply. Yeh I’m trying not to keep the tears in as you say its an emotional time and you do need to let them out. I’ve got my appointment for the PET scan on Thursday so hopefully they’ll get the results of that back before the appointment with the Haematologist and then maybe I’ll know a bit more about what the next step is. I’ve been writing down all the questions that I have so far. It’s crazy the things that pop into your head. Thanks again for the advice and I will be certain to keep posting. :smiling_face_with_three_hearts:

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Thanks so much Lauran. Today wasn’t too bad,trying to keep my head as busy as possible.
I wasn’t given too much info from ENT as the Doctor didn’t want to give me the wrong advice as this wasn’t really her field. However she did say that although FL isn’t cureable that its very treatable and that people go on and have a good quality of life and sometimes don’t need treatment straight away.
I have my PET scan on Thurs and then I have a few days off so am going to try and chill out and try my best to not go down too much of a rabbit hole on google but I will read up on the links that you posted.Its great theres so much support here.
Thanks again for your advice.:smiling_face_with_three_hearts:


Good Morning @Lea,
It sounds like you are coping really well & you are quite correct in staying away from too much online information. However do remember we are here for you should you need a chat at any point- 0808 2080 888.

You have summarised FL really well. It is the most common type of of low-grade non-Hodgkin lymphoma. Follicular lymphoma is not usually curable, but it can be treated so you can enjoy a good quality of life. The aim of treatment, should you require it, will be to get you into remission (where the amount of lymphoma is significantly reduced). This will all be discussed more when you are under the care of your haematology team & they have all your results back.

Along with with our webpage links i wondered if our booklet will be helpful for you as you can pick it up as you please and take take your time with learning new sections of information without hopefully feeling too overwhelmed. You can order a copy for free online using this link- Low-grade non-Hodgkin lymphoma (NHL) booklet | Blood Cancer UK Shop.

Keep in touch and take good care, Lauran