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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

In 2023, I was diagnosed with MGUS, confirmed with marrow biopsy. Now I’m told I don’t anymore. Is this possible?

A MyMyelomaTeam Member asked a question 💭
Charlotte, NC

I haves half brother with MM, 15 years in remission, and I’ve spent 35+ years working as a Nuclear Medicine Technologist
What are the chances it’s really gone, and what is the likelihood it’ll really be there given my genetic connection and career
This is really confusing and, I’ll be honest, frightening.
At the time of my diagnosis, I was also diagnosed with full Thyroid Cancer, resulting in complete Thyroid removal.
Can anyone please address this concern? I really don’t know where to go… read more

April 27
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A MyMyelomaTeam Member

Heather, I'm a one-person MM study. In 2008, I was told I had 'six months-maybe.' In 2010, I was taken off chemo because there were no signs of the disease left. I have annual bloodwork followed by a video conference with my oncologist. It did get my knees and 5" of spine. I'm 84.

April 27
MyMyelomaTeam

First, it's completely understandable to feel frightened and confused — this is a lot to process, especially alongside everything else you've been through. Take a breath. You're asking exactly the right questions.

On whether MGUS can "disappear" — it's uncommon, but M protein levels can fluctuate. It's possible levels Show Full Answer

First, it's completely understandable to feel frightened and confused — this is a lot to process, especially alongside everything else you've been through. Take a breath. You're asking exactly the right questions.

On whether MGUS can "disappear" — it's uncommon, but M protein levels can fluctuate. It's possible levels dropped below the detectable threshold, which might look like it's gone. This doesn't necessarily mean it was a misdiagnosis or that the risk has vanished entirely. Ongoing monitoring is still really important. Regarding your personal risk factors, having a first-degree relative with myeloma and a long career with potential radiation exposure are both worth discussing seriously with a hematologist. Family history is a recognized risk factor for MGUS and myeloma.

Your risk factors worth raising with your doctor include:

- Family history — having a half-brother with myeloma
- Occupational exposure — decades in nuclear medicine
- Age — MGUS prevalence increases significantly after 50
- Prior confirmed MGUS diagnosis A MyMyelomaTeam member shared something that may resonate: "I was diagnosed with MGUS in 2020. In 2023, I progressed to SMM. I have high risk markers that made me progress quickly." Everyone's journey is different, and progression isn't guaranteed.

The most important next step is asking your doctor for a clear explanation of what changed in your results, and whether continued monitoring every 6–12 months is still recommended. You deserve clear answers — don't hesitate to push for them.

April 27

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