@erictd welcome to Mayo Clinic Connect. Although this paper is over a decade old at this point, I found it useful when I pondered many of the same questions.
https://www.mayoclinicproceedings.org/article/S0025-6196(11)60236-X/fulltext
The hardest part of MGUS for me is dealing with the Limbo of not knowing the if, when and how the disease will progress.
My hem/onc doctor reassures me at every appointment that in the unlikely event there is progression, the advances in treatment over the past decade give me excellent odds of recovery.
That helps, of course, but you do feel as though it hangs over you.
I’m so sorry that your daughter suffered from this disease. It’s not something that is routinely tested for and is found incidentally when they are looking for something else.
I’m glad you found our group in Connect because it feels good to connect with others. Each story is unique and although my path may be different from yours and our other members, the support is comforting.
I hope you will share whatever information you find, will you?
Patty