I am newly Diagnosed with MGUS.

Please try to stay positive for your sons' sakes. Try to live a normal life. You probably will come ahead on this deal! I am 72 and was diagnosed 3 months ago with mgus. I was devastated like you. My mom died of multiple myeloma last March and my mind has been in overdrive lately. All we can do is try to live a normal life. It is what it is! We can't change what's been given to us. Prayers for you and yours. Take care!

Offering you a big hug as I have been where you are. I was diagnosed with MGUS 11/2021 after a CT Scan for another reason indicated an enlarged spleen. I was afraid when they referred me to an oncologist/hematologist as I immediately thought "cancer" and all that went with that word. Lots of bloodwork, bone marrow biopsy, 24 hour urine, and visits every 3 months, I'm now on a follow-up schedule for 6 months. I was the worst with Dr. Google looking for answers, but Dr. Google did not have my chart in hand and I have fired him. I had never heard of MGUS or understood its' precursors to more serious blood cancers, and now I am grateful for knowing, rather than not knowing. I'm no longer thinking about this 24/7 and waiting for the other shoe to drop--I know what to look for and have a medical team who will help me if I have any symptoms. At first, I was scared and my oncologist has talked me off the ledge a few times. Now, I keep a journal to track everything I feel, think, want to know, etc., and bring it to my appointments. Does the cancer thought ever go away completely? No, but I have taken more control of how I deal with it. As others have recommended, you may want to reach out to someone to talk about it to learn how to deal with these thoughts. Ask your Oncology Team to make recommendations to help find the right care. Also, I read this website daily to keep up to date and just stay informed. Congrats to you for taking the first step and being part of the community and sharing your story! Please stay in touch!

This is really encouraging!! How often do you still get tested?

Never mind! I just reread your post: yearly 🙂

Dx bmb & aspiration was august 2021, symptomatic MGUS (just shy of SMM) and I felt relief to finally know why I wasn’t feeling so good (instead of the medics constantly telling me, despite abnormal bloods, that I had munchausens). I searched all the research material I could to form a comprehensive picture and deep understanding of my particular classification of MGUS, so I could guide choices in a much more informed way (databases, mostly PubMed, for peer reviewed research) because I live alone and have to anticipate future events with some measure of accuracy for planning purposes. There was a bit of conflicting info in the findings, however I measured that against the quality of the findings (and I tended to place greater weight in systematic reviews, high quality retrospective studies, and double+ blinded trials). Since some of the guidelines were conflicting, I tended to place less weight in them, particularly since they didn’t focus on my type of MGUS in hand with concomitant health issues. Having said that, I have rusty experience in data review, as well as in hearing much worse news (much much worse) than being told I have MGUS (which, as mentioned, was like having proof lift the weight of years of baseless accusatory ‘Munchausens’ off my shoulders from the medics here in Au). After that, I could enjoy researching all about MGUS to remove the mystery and concern of the unknown (former anatomy teacher in tertiary education - however, memory loss and cognitive decline which commenced when I started to get unwell and have proteins start showing up in bloods, prevent me from what once was a pretty enjoyable job).
From my perspective, I always encourage people to learn about their conditions, so it can alleviate the fear, as well as dispel other negative emotions, enabling a sense of mastery and self determination, once the initial shock of receiving unpleasant news has passed. Knowledge is power, per Francis Bacon, I think (no relation to Kevin Bacon, a la ‘six degrees of Kevin Bacon’ fame 😉).

Thank you so much Ginger. Your optimism and kindness really brings me comfort.

@katytx brava! Yes I have concluded that it is the anxiety that impacts my health adversely. When I was first diagnosed my anxiety about the “what ifs” made me feel so sick.
I have learned to stay away from Dr Google. My Hem/Onc doc LOVES to go over data with me if I have questions. He lights up like a kid in a candy store as he scrolls through recent literature so I know he is diligent. In the three years I have known him I find him to be an easy read as he scrolls through the results of my quarterly blood draws. His face, last appointment, read that he is cautiously optimistic and I can be trusted on my own recognizance for a six month interval this time.
So I am LIVING my best life. I am enjoying friends, traveling, doing music, theater and keeping my family in touch with one another to the extent that one can with children and grandchildren who are moving targets.
Life is good and I don’t want to miss it because I am too entrenched in the “what ifs.”
In some ways, MGUS is a gift. I get excellent medical care and I have been reminded that life, no matter what your circumstances, is precious and far too short.
Live it!
I am going to the Barbie movie tonight with a dozen of the brightest, most accomplished women I know. We will all don our best pink and laugh and enjoy the humor and sisterhood. Frivolity!
Have a wonderful new week.
Patty

The anxiety is a huge piece for me and seeing you able to overcome that makes me feel like it’s possible too.
My next steps are in a couple weeks and I’m hoping my care team can put my test results into context. I think that will relieve a lot…
Seeing everyone’s positive remarks, even those that have progressed in their journey really makes me feel like everything will be ok. I’m so appreciative to have found this group. I take snapshots of these posts so I can quick-look through my photos when I need a positive boost at any moment throughout the day.

So glad you found us!

Hi everyone. So glad I found this support group. I was diagnosed with Mgus about 7 years ago. I see a hematologist every 6 months. I listen to what she has to say and try to stay off “Dr Google” which just increases my anxiety. Otherwise I’m well. Stay healthy my new friends ❤️