I'm a 51 yr old male diagnosed about 6 months ago with MGUS. Seeing the anxiety expressed in this forum about MGUS, I thought I'd post this entry about a few things I've learned:
1. At www.mayoclinic.org/news2006-rst/3302.html, Dr, Kyle indicates that 3.2% of people over age 50 have MGUS. Based on census data (www.census.gov/popest/national/asrh/NC-EST2006-sa.html), there about 100 million people or so over age 50; that means over 3 million of us in the U.S. alone have MGUS. That's a lot of people! Of course there are even more if we counted those with MGUS with onset before age 50. Worldwide there are probably 50 million or more of us. MGUS is not rare.
2. Since these spike proteins are produced by our immune systems (i.e. are part of defending against disease), I have come to think of MGUS as a bodily "defense alert." MGUS means our bodies are shooting a very specific kind of bullet (an antigen), and in most cases doctors cannot identify a disease state it is shooting at. In any given year, 99% of the time there is no disease, so in most cases MGUS may be simply an overactive defense system. It might be compared to an allergy (an oversensitive immune system), and is the opposite of AIDS (i.e. a damaged immune system). There is usually NOT a "ticking time bomb."
3. The risk of MGUS progressing to a form of cancer is about 1% per year (see A Long Term Study of Prognosis in MGUS, New England Journal of Medicine Feb 21 2002, by Robt Kyle et al --
http://content.nejm.org/cgi/content/full/346/8/564 ). So the odds of staying healthy are strongly in our favor -- even over 30-40+ years, the odds of staying healthy are greater than those of getting cancer!
Of course, for about 1% of us each year year (30,000 out of that 3 million), an oncoming disease state will rises
to the level of being defined as cancer. But most of us will outlive MGUS and die of something else altogether.
4. I try to ignore all uncontrollable risk, de-emphasize 1% risks, and concentrate on 3-5% risks. Since MGUS is a condition of the immune system over which we have little control, let's concentrate on the things we CAN control to extend quality lives -- exercise, nutrition, cutting risky behaviors, etc. Many more lives can be saved, extended or improved this way than by worrying about uncontrollable risk. There are so many other uncontrollable things we could choose to worry about, like terrorism, freak auto accidents, etc etc. to no effect. Let's just act on what we can control and live gratifying lives anyway!