Low Grade Follicular Lymphoma

I got diagnosed with Low Grade Follicular Lymphoma two weeks ago. The consultant talked about 'watch and wait' as an option as I have no other major symptoms apart from a number of swollen lymph nodes in y neck. I had a PET scan 5 days ago, and today I get an appointment out of the blue for a 'First Infusion Treatment' (four Hours) in the Chemotherapy Day Unit for next week. I am now driving myself insane thinking they have found something else from the scan, but I haven't been able to talk to anyone at the hospital to help me. 

Anyone experienced anything similar? Why the sudden turnaround?

  • Hi Liam66, 

    It must be a bit of an anxious time for you having to deal with this uncertainty after just being diagnosed and I thought I would share with you the information we have on our website on low grade follicular lymphoma. You will find out more there on the different treatment options such as active monitoring or first line treatment. It must be so confusing for you if you were expecting to be on 'watch and wait' to suddenly be given an appointment for a first infusion in the Chemotherapy Day Unit next week. Our website has a great section on chemotherapy which I hope you might find useful to help you prepare ahead of your appointment. But I think that given that you were taken a bit by surprise and were not expecting this, you deserve to get answers so that you understand why there was this change in approach. It's a shame you haven't managed to talk to someone at the hospital - is there a way you could perhaps try and get in touch with your consultant or their secretary and find out more this way? Or perhaps you could try and see whether you can already have access to the PET scan results and if there is any additional information from these results you need to be aware of? 

    I hope that you will hear from other members of our community who have had a similar diagnosis in the past - I found this follicular lymphoma thread by  from a couple of years ago which may be of interest to you as this member was at the time writing about being about to start chemotherapy treatment and you will notice  replied to that thread and was at the time on active surveillance for follicular lymphoma. These are just a couple of examples and I hope someone with relevant experience of treatment or who has had a similar diagnosis will come along and share their story with you. 

    You're bound to have a lot of questions racing through your mind at the moment and if you ever needed to talk things through with one of our cancer nurses, they have a free helpline you can call on 0808 800 4040 - it is open Monday to Friday from 9am to 5pm. 

    I hope that you get a little bit of clarity soon as to what is going to happen and if you're starting your chemotherapy treatment next week, I just wanted to wish you the best of luck with it and I hope that it will all go well for you. 

    Best wishes, 

    Lucie, Cancer Chat Moderator