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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (862)

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@pmm

Hello Bob,
I would think that a hematologist/oncologist would be the definitive expert for you. MGUS is not cancer but it is definitely a blood anomaly that has the potential to morph into cancer. While the statistics of that happening are favorable to us and unfavorable to Multiple Myeloma, we must protect ourselves as best we can by getting diagnostic bloodwork done on a regular basis. The results are complicated so I want the most experienced hem/onc doctor I can find to read those results and advise me.
For the first almost three years I got quarterly blood draws but have “graduated” to every six month draws just recently because my numbers have been stable. There are members in this forum that have MGUS which has not advanced in well over a decade, and those who have had a quick progression to smoldering Multiple Myeloma or Multiple Myeloma. We all wish you disease stability, but encourage you to find the best health care provider to monitor your blood disorder.
Be picky. I don’t know about where you live and the availability of good Hematologist/oncologists in your area, but find an experienced one who will be patient with all your questions and be vigilant about monitoring you for progression of your disorder. Make sure you get a referral from your PCP. In my experience they know very little about blood disorders. Luckily, my own freely admitted that she does not and referred me right away. Finding the right doctor is sometimes luck-if-the-draw, but read recommendations and look at training credentials.
Finally try to keep a glass half-full perspective. MGUS is a strange duck that can be without any symptoms at all. I go about my life and travel, do things with husband friends and aside from some neuropathy in my feet (which is probably attributable to diabetes but who knows) I have no other symptoms. Enjoy life. Have fun. Worry about those things over which you have control.
I wish you all the best.
Patty

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Replies to "Hello Bob, I would think that a hematologist/oncologist would be the definitive expert for you. MGUS..."

For those kind enough to answer and give advice, an update:

My GP has agreed to refer me to a hematologist.

I'm in Canada, so it could be a while, but at least it will happen.

Thanks to all.