Hi, I was diagnosed with sjogrens nearly five years ago after years of my bloods showing weird antibodies. Since then I've had yearly scans of my salivary glands via my dental consultant and had a biopsy pre covid on a lump which turned out to be nothing. I had a second biopsy taken in August from a new lump on my other cheek and on Tuesday last week my consultant called me to say he needed to see me, I went in on Friday to be told I have "low grade b cell lymphoma" and that he has referred me to haematology. My husband and I are absolutely terrified, we have no idea how long the referral will take and have spent the weekend hiding our tears from our kids. Trying to avoid Dr Google as much as we can.
Is there anything useful we can be doing while I wait to hear from haematology with an app? We feel so lost with it all but trying to take positives from me being asymptomatic and that it was picked up in a routine scan so hopefully it's been caught early...
Hi again and welcome across to our little corner of the community. First you and your husband need to take a few breaths….. and a few more.
As I said in my first post to you in the New to Community I was diagnosed way back in 1999 with a rare, incurable but treatable, but hard to treat type of T-Cell - Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
The main thing you need to get from my journey is that Lymphoma is very treatable with great results even when like myself, folks have very rare type of NHL.
There actually are few different types of B-Cell Low-grade non-Hodgkin lymphoma - have you been told this or most likely you will find out more once you see your Haematologist.
The fact that you have an initial diagnosis the appointment will most likely turn round rather quickly.
As for being asymptomatic, I was basically exactly the same with only a small rash on my back. Lymphoma us often found during being investigated for something completely different.
What you can do is look at this link Questions to ask your medical team about Lymphoma and start an old fashioned note book and start listing all your questions, thoughts, feelings ready for your first appointments.
Please stay away from random Google searches, it will scare you as there is so much misinformation out there. Please do use the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos with all the information clinically checked for accuracy.
I am sure you have lots of questions so do ask them ((hugs))
