Does anyone else have MGUS?

Thank you for taking the time to reply to me. I am an old had at this wait and watch. I was diagnosed at 36 with breast cancer and had a total mastectomy. I had a Dermatofibrosarcoma in 1986 and I am now 92 years old, so the waiting and watching has been going on all my life. I have come to the conclusion, I am not going to leave this world until God is ready for me, so I enjoy each day and look forward to the next. Hope all is well with you and God love you
Georgina

Welcome Gina, it does seem odd to watch and wait but as Ginger noted, that’s what we do. Your Oncologist/hematologist will draw blood every 3 to 6 months and compare the results with your previous draws. If there is a change in the trajectory there will be a discussion about treatment.
I was anxious at first, but I find that only makes me feel bad so I have learned to chill and trust the process. I was diagnosed about two years ago and my numbers are pretty stable. Statistically, very few people with MGUS progress to smoldering or full Multiple Myeloma.
I try to keep my glass half full instead of half empty and focus on the good news that every three months I get a full check-up of the blood that keeps me going.
Hang in there. Live each day.
Patty

@gina5009 Welcome to Mayo Clinic Connect! As you read through the posts here, you will discover that the majority of us are told the same thing you have been told. It is a "watch and wait" situation. And, we learn to not let this diagnosis be a big stumbling block to living our best life. Patients often go many years with no progression to another level, and quarterly or semi-annual bloodwork is done for the monitoring.
Ginger

I have just been diagnosed, although no one is excited at this point. I had 14 lymph glands removed in 1968 and had a low Red Cell Count all my life. No radiation, chemo etc. Believe it or not I will be 92 in March. I have been told to come back in 6 months and not to be concerned???
Georgina

You have to have trust in your treatment efficacy so I’m glad you kept looking for a doc you feel good about.
I like my local HEM/ONC guy but if I ever question his diligence I would go to Mayo or MD Anderson. I’m 70 but hope to have some good years left to spend with my family and do a little travel.
I love the humor in this thread. This is harsh having MGUS lurking like a mugger in the back of your mind. If you allow it to dominate your thoughts it impacts your ability to enjoy each day. I try to laugh as much as possible. Well done!

Hello from Galveston not far from MD Anderson. Can I ask what routine test diagnosed it? Thanks

I switched from one medical provider to another due to not being able to get the care I felt was needed. I have to get new bloodwork done for my new physician because he felt the previous doctor wasn’t giving my issue enough attention. I also have anemia and that is the issue that was receiving the attention. However, according to my bloodwork from Aug 2022, the new physician said I will need to be seen every three months.

I’m a little disappointed with my previous provider because MGUS was diagnosed, but essentially it wasn’t being treated/monitored.

I was recently (November 2022) diagnosed with MGUS - routine blood work from primary care - Quest Lab suggested on report that additional tests be run.

Was already an existing patient at MD Anderson - Houston. Was able to get appt. with Dr. Saini in Myeloma dept. He ran lots of blood work and confirmed I have IgG MGUS.

Will have follow up bloodwork done every 3 months. Next appt. at MDA is
February 9th, 2023

What is your plan going forward ?

Jackie in Hill County, Texas

Just diagnosed and I must admit I'm concerned. Since there's no cure or treatment, waiting to see if it progresses is very unsettling.

@tallyteresa I say i am an overachiever, in that I couldn't be content with one health issues, I had to have more! And, my siblings are pretty darned healthy, so I guess I was just volunteering to take on health concerns! As for my dialysis, I do it every day, via peritoneal dialysis catheter.

Being a Volunteer Mentor for Mayo Connect is an honor for me, and there is great pleasure in helping others on their journeys.
Ginger