I was diagnosed with SLL last summer. Thankfully SLL is pretty stable, I do have symptoms but am presently on ‘watch & wait’.
If I’m honest it all felt quite surreal, being told that you’ve cancer but that it’s not initially (or maybe never) going to need treatment. But also told it’s not going to go away either. Took a while to get my head around it.
How do others cope with ‘watch & wait’ longterm?
I don't have Small Lymphocytic Lymphoma (SLL) but was diagnosed in way back in 1999 with a rare, incurable but treatable low grade type of NHL Stage 4a so I know this journey rather well.
I was basically on Active Monitoring (Watch and Wait) for over 14 years before I needed full on treatment. Yes I had regular clinics and as my type of Lymphoma was a rare skin type and was having skin treatments just like as if I had bad Psoriasis - you can see my full story by hitting my Community name.
I have talked with many people like yourself who have SLL who have never had any treatment and are living a normal life - long may this continue for you but if required, there are lots of treatment options available.
The BOLD links above are taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Online Lymphoma Online Support Groups and have a very great Lymphoma Buddy Service where people can be linked up with someone who has walked or are walking the same cancer journey before.
Always around to chat or help as best as I can.
Mike - Thehighlander
Click to see how to add details to your profile