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@nick86

Thank you so much for your reply. I'm finding the amount of info out there to be a real mine field. From what I've gathered from the Mayo clinic I'm "low risk." Also the Pangea model predicts my chances of progression at 20 years to be low. I have no idea how it is able to make that prediction as it seems every case is highly individual as you've said. Then there is a study stating that MGUS can progress to myeloma within five years. The Myeloma UK info, which is what I was given by my haemotologist, also puts me in the "low risk" category. However this seems to be a real generalisation and I don't see how it can be accurate. All of this contradictory info has left me feeling like even the so called experts don't understand MGUS.

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Replies to "Thank you so much for your reply. I'm finding the amount of info out there to..."

MGUS - from what I have learned - definitely isn’t well understood (the key is in the title: undetermined significance = we have little idea what it means or how important it is to the health of a person).
And I find such long ranging ‘predictions’ are like trying to predict weather in one year/5 years/10 years etc, exactly what will the rain be like on any given day…the further away, the less accurate. Yes there are patterns, but the nature of patterns is that there is always more than one type of pattern that contributes to the spread over time, thus there can be outliers as easily as their can be mainstream/expected results..and these patterns of spread are aggregates of data collected from places and services that may or may not include data specific to your given situation (eg: virus exposure as a child, toxin exposure/metabolism, underlying disorders/stressors/nutrition, for example, let alone something directly attributable to MGUS itself that may be unique but not accounted for in the data used for analysis). So, yes; these predictions are just that: predictions. Not conclusive, comprehensively inclusive results applicable directly to any individual. They are what I consider to be a rough guide only (like saying summer will be hot, winter will be cold, but no further breakdown or accuracy can be given for one specific day in those seasons when those seasons are months away). Given that it’s a guide, I believe to place too much stock in it in terms of individual applicability then places an undue and artificial stressor on a person. I believe it’s better to understand what predicted risk is (just a kind of educated guess), however primary concern is individual case factors and how these develop individually over time, and then how these can be used as aggregate predictors for that individual based on the knowledge of how each predictor (symptom) discretely behaves within the realm of the disease (eg: kidney disease, light chain disease; if they are present in the individual, watch, monitor, and then predict future outcomes for that individual based on what is known about kidney disease or light chain disease in MGUS).
I hope that’s helpful.
I imagine this new discovery of yours regarding MGUS is your kind of ‘baseline’, and rather than using educated guesswork without knowing your individual pattern over the next year of monitoring to determine risk of progression while feeling the worry of how that is like fitting a square peg in a round hole when it just doesn’t work, it may be better to learn about how symptoms and regular test outcomes can be indicators that show your individual characteristics - then, you can make predictions as to whether you are part of the mainstream risk of progression ‘educated guessing’, or you’re landing outside of that aggregate calculated predicted trajectory. If you see changes like I have for instance, you’d likely lay outside of that risk prediction (like snow falling in summer; it’s happened before, but nobody would have predicted it to happen at all). But if you do not see significant change or notice symptoms, then it may be that you’re within the risk prediction - either way, there’ll be a better sense of clarity and confidence about how to progress with life and medical care into the future.