my partner has just been diagnosed with Diffuse large B-cell lymphoma. He had a lump that appeared on his neck. We are waiting for a pet scan that should have taken place last week, but was delayed due to lack of contrast liquid. We felt very helpless and having been told that the cancer was an aggressive type are imagining that it could be spreading while we are waiting for the scan.
Hi again Olivecat and we’ll done navigating across to this corner of the community.
As I said in your post in the New to Community area I don’t have DLBCL but I have been on this journey with 2 rare types of T-Cell Non Hodgkins Lymphomas for over 25 years….. so know this rollercoaster rather well.
The positive thing is that as your partners DLBCL is an aggressive High-grade non-Hodgkin lymphoma it is very treatable, lots of treatments available and the initial aim is to treat to cure.
My second type of T-Cell was also a High-grade but that was diagnosed back in late 2013 and I am still living a great life….. but my Low-grade is with me for life but it’s fast asleep at the moment.
The PET scan will be used to stage him…… but it is VERY important to understand that Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not.
I was stage 4a back in 2013 when my brick sized mass grew in my neck and my bone marrow was full of Lymohoma cells…… but this made no difference to my outcomes…… I turned 69 last minute th and I am living a great life.
Staging in Lymphoma identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
In my early days when I was getting treatment for my first T-Cell Low-grade it was on my skin and at times I was 70% covered with tumours…… but nothing is now visible.
It’s important to read up and understand his DLBCL….. and also to start getting your questions ready for his next appointment….. the links below will help you get ready for this.
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
But if you want so ask any specific questions do list them and we will do our best to help you out ((hugs))
