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Updated on October 16, 2020 Article written by Daniel Bukszpan |
Medically reviewed by Dr. James Hoffman |
Monoclonal gammopathy of undetermined significance, more
commonly known as MGUS, is a condition in which an abnormal protein called monoclonal protein is present in the bloodstream.
Monoclonal proteins, or M proteins, are produced by abnormal plasma cells in the bone marrow. Normal, healthy
plasma cells are white blood cells that produce antibodies to help us fight
infections.
MGUS is not a malignant disorder, and it causes no symptoms or
damage to the body. However, approximately 1 percent of people diagnosed with MGUS progress each year to
more serious illnesses such as myeloma or amyloidosis, and these can certainly
be dangerous and require treatment.
Treatment is not appropriate for people with MGUS. Instead,
doctors will recommend observation — usually with testing every six to 12
months to monitor the condition.
To learn more about MGUS, MyMyelomaTeam talked with
hematologist-oncologist Dr. James Hoffman, assistant professor of clinical
medicine at the Sylvester Comprehensive Cancer Center, University of Miami. His
focus is on plasma cell disorders, including monoclonal gammopathy of
undetermined significance.
Risk Factors for MGUS
Some people are more likely to develop MGUS than others. Four factors indicate a higher risk of MGUS:
·
Older age (the biggest
risk factor)
·
African or
African-American ethnicity
·
Being male
·
A family medical
history of MGUS
From Benign to Malignant
Dr. Hoffman described plasma cell disorders as a continuum, with
monoclonal gammopathy of undetermined significance at the mild end. “MGUS
requires observation,” he said. “Multiple myeloma requires treatment. That's
the spectrum from benign to malignant within the world of plasma cell
diseases.”
MGUS affects the people who have it in different ways. Many say
one of their most significant concerns is that the condition will progress into
a more serious condition, such as multiple myeloma.
Some members of MyMyelomaTeam do experience progression from
MGUS to multiple myeloma, in which cancerous plasma cells accumulate in the
bone marrow. “I was first diagnosed with MGUS in 2014,” wrote one member. “In
late 2015, after a [bone marrow] aspiration, I was told it became full multiple
myeloma.” Another member said, “After ongoing monitoring, I have started
treatment for multiple myeloma.”
However, most people diagnosed with MGUS live with the condition
without it ever developing into smoldering multiple myeloma or multiple
myeloma. “My sister has had it for five years or so,” one member shared. “They
check her labs every six months — no signs of active myeloma.” Another wrote,
“I have been diagnosed with MGUS since 1996. … I have not been diagnosed with
myeloma or any other condition.”
Although MGUS is a benign condition, it still requires regular
checkups. The critical health concern is the abnormal protein level in the
blood and, in the case of MGUS, there’s very little. On the other hand, in
myeloma, those cells grow and cause damage, making it essential for people to
keep tabs on the condition with the guidance of their health care providers.
Monitoring and Blood Tests
Dr. Hoffman explained that people with MGUS could have their
need for treatment prioritized based on their risk factors. Of those with MGUS
at the lowest risk for progression, only about 0.5 percent per year have their
condition become more serious. People with higher-risk MGUS may have up to a 3
percent annual risk for progression and need to be watched more carefully.
“Generally speaking, having low levels of these abnormal cells
in the bone marrow, having low levels of the protein in the blood, those are
two really critical variables,” Dr. Hoffman said. “That tells you the burden of
the illness is very, very low. If there's a higher amount of cells, then the
risk is higher.”
In many cases, successful monitoring of MGUS can be accomplished
with blood work alone. This spares people the type of unpleasant or invasive
testing that can make them reluctant to become diligent partners in their own treatment.
Blood tests used to monitor MGUS commonly include a complete blood count, a
comprehensive metabolic profile, serum protein electrophoresis, and serum free
light chains, among others.
“People don't need repeated bone marrow biopsies or repeated scans,”
Dr. Hoffman said. “Again, thankfully, the majority of people will never need
treatment, so we try not to overtest those patients.”
Moving Forward After MGUS Diagnosis
Living with MGUS can still cause anxiety, even if the risk of
progression to multiple myeloma is low. “My husband was diagnosed with MGUS
three years ago,” a spouse on MyMyelomaTeam shared. “So far, his labs are good,
but it scares me to death.” She added, “We see the oncologist every six months,
even though they say once a year is enough. But I want to keep an eye on
things.”
The small percentage of people with MGUS who develop multiple
myeloma generally do somewhat better than those who didn’t realize they had
MGUS before they developed myeloma. “I had MGUS for 12 years prior to diagnosis
with multiple myeloma,” a member shared. “I understand the odds are it won’t
move on to MM from MGUS, but if you stay in contact with your oncologist, you
have a better chance of catching it early.”
Dr. Hoffman agreed that keeping an eye on things is a big part
of making sure MGUS does not progress into something more serious. At the same
time, he wanted to make sure people understand that outcomes for MGUS vary, and
many people never see it turn into something more serious.
“Remember, wherever you are on that spectrum, the majority of
patients will not die of this problem,” he said. “It does require vigilance,
you do need to have follow-ups, and you don't want to allow something to occur
without paying attention to it. But again, for the majority of people, it's a
benign condition.”
By joining MyMyelomaTeam, the social network and online
community for those living with myeloma, you gain a support group more than
7,700 members strong. Living with MGUS is one of the most-discussed topics.
Here are some conversations on MyMyelomaTeam about living with
MGUS:
·
“Have any others been diagnosed with MGUS and not ever developed MM?”
·
“If I truly do have MGUS, shouldn’t my oncologist have told me?”
·
“I originally was diagnosed with smoldering myeloma, but it was changed
to MGUS.”
How does MGUS affect your daily life? How often does your doctor
monitor your symptoms? Share your experiences in a comment below or on MyMyelomaTeam. You'll be
surprised how many other members have similar stories.
References
1. Monoclonal Gammopathy of Undetermined Significance (MGUS) — Mayo Clinic
2. Monoclonal Gammopathy of Undetermined Significance (MGUS) — Cleveland
Clinic
3. How I Manage Monoclonal Gammopathy of Undetermined Significance — Blood
4. Can Multiple Myeloma Be Found Early? — American Cancer Society
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