I’ve recently been diagnosed with Stage 4 extra nodal marginal low grade non Hodgkin’s lymphoma following a misdiagnosis of metastatic breast cancer (I had breast cancer in 2017 which was successfully treated with surgery, radiotherapy and Tamoxifen).
Consultant was initially going to recommend watch and wait but is now unsure because I have night sweats. I’m being sent for another PET scan to see if anything has changed since May to help her make the decision, but I’m probably going to have 6 rounds of Rituximab and Bendamustine.
Looking forward to reading the posts in this forum, useful for middle of the night entertainment!
Hi Round Two and a warm welcome to this little corner of the Community although I am sorry to see you joining us and to hear about your Lymphoma diagnosis especially on the back of your Breast Cancer journey.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Extranodal marginal zone lymphoma (also called MALT lymphoma) but for some context I was diagnosed way back in 1999 at 43 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 - Not Otherwise Specified 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.
As you know your MALT is one of the many types if slow growing Low-grade non-Hodgkin lymphoma…… and it’s a balance as to when is the best time to use treatment as it is all about using it at the point it would be most effective.
MALT lymphoma develops slowly and treatment is usually successful. Although the lymphoma often comes back relapses….. (I relapsed multiply times over my first 15 years) but it can be treated again to keep it under control. Most people live with this type of lymphoma for many many years.
As for the Staging in Lymphoma, it is rather different from sold tumour cancers like your Breast cancer…… where a high stage number like stage 4 is often seen as poor prognosis, in Lymphoma it’s just not. 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.
I had a completely different treatment journey (See my story) although I did have over 700 hrs of Rituximab (a monoclonal antibody) as part of my 6 cycles of very strong R-EPOCH and honestly it was all ok…… but let’s see if there are any group members who have had R&B (Rituximab and Bendamustine) looking in.
Happy to chat and unpack the journey more.
