Really kind of you to say - thank you.
Research is key to balancing the probability of change with some valuable insight, I believe. And there are other factors that may be associated with non-cancerous changes that - if you know they’re there and how to recognise them if they show symptoms or signs - you can monitor, which I personally think is empowering to know because things don’t happen without you knowing what to expect if/when they do.
I’ve got IgG Lambda with low IgA.
I familiarised myself with that specifically, and then sought out info on the more prone non-cancer type disorders that can happen. Because of that, I was able to alert haematology of renal changes/cardiac changes/lung changes that have recently happened, and as a result of objective tests, they are now intending to treat early (kind of throwing convention out the window in treating ‘MGUS’ when the word on the street is “we don’t treat MGUS”, thus individualising and maximising therapeutic trajectory rather than sticking with the blanket statistical data that isn’t so one-size-fits-all after all).
Different risk of progression within subtypes exists, however I personally believe it’s much more individualised (and much more differentiated) than what the grouped statistical outputs show.
I started with the basics of learning all the norm ranges for all the test results, then assessing which were key to interpreting risk of progression (individually and in conjunction with each other), then I researched those risk factors to understand where I stood on risk. From early after my first BMB I realised that I was very much not on the 1-2%/year list, and when I tried to discuss my findings (summarised into a short paper with references for my haematologist), he was dismissive and elitist. Now, just on two years later, and with a new haematologist, she says I am likely correct, and I am not like expected MGUS trajectory.
But that doesn’t mean this applies to everyone; what it does show is that learning and understanding facilitates responsible action if needed - we are our own best advocates for a long and healthy life when we know about our bodies. Don’t let a scary thing take control just because it’s unfamiliar; learn the bark of that big dog, and once you speak it’s language, you’ll know how to calm it down.