Hi. I'm new to the group and am looking forward to hearing about how people cope with their diagnosis and carry on with their everyday life without letting the diagnosis take over.
Hi again Sprig and well done navigating across to this corner of the Community.
I won’t repeat what I put in your post in the New to Community (See my story) but I do understand the journey rather well…… I would say being on this journey for 25+ years makes me a veteran ;)
Like my 2 types of T-Cell NHL your Splenic marginal zone lymphoma (MZL) is on the rare side……. But there are a good number of the 60 types and sub-types of Lymphoma are on the rare side…….. but all are very treatable.
Like my first type of T-Cell NHL (CTCL) your MZL is a slow growing Low-grade non-Hodgkin lymphoma.
It is a mindset in that you are told you have cancer but you may well be put on Active Monitoring (Watch and Wait)…… your first reaction could be “I have cancer - cut it out!!”…….. but this is not a solid tumour cancer….. this is a blood cancer and you can’t cut it out (although some people may have surgery where there is a mass that is significant but on its own that is not enough to treat Lymphoma)
There are various levels of treatment but they tend not to be used up quickly…… treatments are used as and when it is seen that the treatment would be most effective…… so your Lymphoma can be left to develop and not treated.
I was basically on Active Monitoring for the first 12 years after my diagnosis…… yes I was having skin treatments as my Lymphoma was very similar to me having bad Psoriasis……. but this did not stop me working full time in a very demanding teaching job, on a full timetable for 12 years. We went on holiday as normal……. Just lived a normal life.
I only had to have full on treatment (Chemo, Radiotherapy and Stem Cell Transplant) due to my second aggressive T-Cell appearing…… if it had not appeared I may not have had full on treatment to this day.
looking forward to hearing about how people cope with their diagnosis and carry on with their everyday life without letting the diagnosis take over.
This is the big money question….. when I was first diagnosed on May 1999 my consultant said that when it comes to ‘Living’ with a Low-grade non-Hodgkin lymphoma it needs to be seen as a chronic health condition.
He used having diabetes as an example…… if you have diabetes you are basically on treatment for life….. each day is a balancing act with regular monitoring and treatments…… if you get this wrong bad things can happen.
On the other hand you can live a normal life with little or no treatment when diagnosed with a low-grade NHL…… yes there most likely will be treatment required at some point but it’s only for a short-ish period of time and life gets back on track.
Like my first T-Cell your MZL is seen as incurable but very treatable. The treatments tend to provide good periods of remission…….
Unfortunately for me, the complexities of my CTCL ment that the longest remission I had was 9 months before I had to start treatment again……. this went in for 16 years but the developments in treatment over the years has now seen me go 10+ years without treatment…… my team are so confident that this will be long lasting that I was discharged and don’t see them anymore.
Keep asking your questions as this helps to reduce the noise between the ears.
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
