My mum was diagnosed with mcl low grade stage 4 sept 24 and is on w&w but everyday her mental health is getting worse its constant all day every day, she feels her life is over she will never get it back or feel good again. She is scared of treatment and if it will work and how long for and her future please if anyone can help pls get back to me thank you xx
Hi Familymember and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your mum.
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 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 - NOS 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.
The main thing at this early stage is understanding Lymphoma. Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) but out of the top 5 this remains the most treatable with great results.
As for the Staging in Lymphoma it is very 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 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.
With some types of slow growing..... often Low-grade non-Hodgkin lymphoma..... like how your mum's MCL is presenting what is called Active Monitoring (I prefer the term Active Monitoring to Watch and Wait as it’s more accurate as to what is happening) is used - I was on Active Monitoring for over 14 years before I had any full on treatments (but my type of low grade NHL was ‘on’ my skin so was treated as though I had Psoriasis).
In way of encouragement for your mum and indeed yourself...... when I was first diagnosed our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes I had various treatments over the years ........ 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 69 in Nov and as a family we celebrated 9 years since my last treatment back in the middle of Nov.
I am living a great life and we continue to look forward to what else life has in store first us to enjoy.
Any questions just ask and I will do my best to help you out.
