Good morning, Thought I would say Greetings to everyone
As with everyone here, the last tow / three months have been fun……. Everyone seemed to think I had Lung Cancer as there is a mass on the top lobe of my left lung - very active according to my PET Scan but after a recent specialist review of my CT driven biopsy, it shows I have MALT Lymphoma Slow Growing Low Grade.
Have gone from Cardiology to Respiratory and now on my way to Haematology. Have no stage identified yet.
I am my wife’s career as she suffers from Alzheimer's but fortunately we have our two boys living with us whilst they move between their Masters and employment, so are very lucky here .
Guess I won’t be seeing anyone before Christmas now. Read all the info on the site about treatment.
Thanks for listening and any help / assistance / suggestions / opinions would be gratefully received.
Hi Dolydd and a warm welcome over to this corner of the Community although I am sorry to see you joining us.
I am Mike and I help out around our various Lymphoma groups. I don’t have MALT lymphoma but I was also diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
How you have been diagnosed is actually not that unusual as although Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) it is often mistaken to be a specific cancer relating to where the Lymphoma is located…… being a blood cancer/cancer of the Lymphatic-System it can basically turn up any there in the body and in multiple places at the same time…… I have a rare skin Lymphoma so my Lymphoma was on my skin and at one point my skin was 70% covered with tumours.
The odd thing about going through regular monitoring for Lymphoma is other health things can be found…… in my case 13 years (2012) into my Lymphoma journey being diagnosed with Asbestosis.
When you eventually get your appointment with a haematologist you may find this link helpful as you get your top questions thread for that appointment Questions to ask your medical team about Lymphoma
When it comes to Staging in Lymphoma it is rather different and unlike most other 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 and 3) How long your treatment needs to be.
With some types of slow growing Low-grade non-Hodgkin lymphomas you may be put on 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) 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).
Happy to answer questions as best as I can.
