I was just wondering has anyone on here beeen diagnosed with stage with stage 4 mantle cell lymphoma with a TP53 mutation, how has your journey been?
Hi Confused1978 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
There have been a few new members in the group lately so let’s see if they are still looking in.
Lymphoma is the 5th most common type of cancer in the UK after breast, lung, colon and prostate cancers and with over 60 types and sub-types of Lymphoma……. Lymphoma can be a complicated condition…… but even some of the more rare types like my 2 (lucky me) and even with some unique complications remain to be very treatable.
It’s very important to understand that Staging in Lymphoma is very very different from solid tumour cancers like Breast, Lung, Colon and Prostate….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s just not.
As I said I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas 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.
A few questions…..
Are you newly diagnosed?
Have you been given a treatment plan?
Are you in the UK
Always around to help out.
