Hello! I was diagnosed with NMZL last April 2025 during investigations for eventual breast cancer diagnosis. Large lymph nodes were found under both arms and then on MRI and CT scan and following biopsy was confirmed as lymphoma. I have no symptoms of the disease and so the focus last year was on treating the breast cancer and so I had 2 surgeries and now on hormone suppression medication for 5 years.
All my blood results are normal and I have no visible lymph nodes so I am on watch and wait and see my haematologist every 4 months (extended from every 3).
I am looking for others who may have been diagnosed as an incidental finding and how you cope with the knowing you have a cancer but that nothing is being done to treat or remove. I understand the decision behind this and I am very grateful that I am well but mentally it has been and will likely continue to be a lot to process! I try and live life to the full and I am back working full time (I am 55) but do feel that my peace of mind has forever gone and wish I did know how long I will stay well before I need treatment. Any similar stories to share how people cope?
wishing all of you well on this group x
Hi KarenPP and a warm welcome to this corner of the Macmillan Community but I am sorry to see you joining us.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Marginal Zone NHL but for context I have been on my Lymphoma journey for over 26 years first diagnosed way back in 1999 at 43……. when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I was basically on Active Monitoring (Watch and Wait) for the first 14 years of my journey, I was getting skin treatments as though so had bad Psoriasis….. but no full on treatments.
I was diagnosed when our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job on a full time table fully understanding there were treatments available as and when needed.
In Oct 2013 I had a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4…….
So I had some intensive treatment between Oct 2013 to Oct 2015 (chemo, radiotherapy and 2 Allograft (donor) Stem Cell Transplants)……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am 10 years 7 months since my last treatment.
I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. be encouraged.
Any questions just ask ((hugs))
