Yes; it’s perplexing and almost like a weird form of punishment! I’m being facetious here, but sometimes it does feel like that when - as you’ve described - you’re told to report, told it’s related to MGUS progression, then told nothing will happen until (in my case from my haematologist) you have overt CRAB. In the mean time, damage is being done. And there’s also the harm coming from judgement that it’s ‘only’ MGUS, and even with symptoms “you don’t have SMM or MM” so “there’s no need to think you have cancer” is what I’ve been told. Clearly, MGUS isn’t classified as cancer - I’ve been beaten like a drum enough on that point thank you very much, but the other symptoms that aren’t cancer are what cause me much issue, but due to MGUS “not being cancer”, by default the other symptoms are summarily dismissed. In my experience, they are not linearly correlated thus shouldn’t be considered such. But this is the faulty ‘logic’ I’m disappointingly faced with each time I see the haematologist…who demands I return for this little mind-game each 4-6 months. Setting aside being flippant, in my experience it is an otherwise unaware form of harm to MGUS patients directly enacted by medics that incorrectly associate the classification of cancer to the ‘acceptable’ experience of symptoms from plasma cell early dyscrasia; seems to me that some people have either a significant level of impact from monoclonal gammopathy due to its activity on the body, or they have a distinct susceptibility to that activity, or a combination of both factors, and this needs to be recognised, studied, and evaluated to determine if treatment interventions would be warranted to prevent damage due to the ‘non-cancer’ effect on tissues of MG’s.
I think it’s very relevant to discuss these currently peripheral but significant contributors to quality of life and adjunct harm to the body, besides the relationship to cancer, and I think this could also benefit the people with more advanced disease in terms of what I call the ‘collateral damage’ of MG’s in the body.
Just musing 🤔🙂