Hi @theodicy and welcome to Mayo Clinic’s Connect. Oh boy I do remember when I was diagnosed with MGUS in 2021. I was hyper vigilant about any ache or pain and attributed to MGUS. It didn’t help that I couldn’t get an appointment right away with a hematologist/oncologist. So of course I went straight to Dr. Google who, it seems, is a glass half empty resource.
Eventually, I found Connect and was reassured by members who have had MGUS for years and many for decades without progression to smoldering or multiple myeloma. I am definitely grateful for their stories and it reinforces what I read in the literature that the chance for progression is very small. The support that I received from other members has really helped me to relax.
It’s important to consider that once you are diagnosed with this blood disorder, which is benign and not cancer, you’re going to be followed closely by your hematologist/oncologist. Some of us are seen semi annually or even annually. They will do scans periodically to ensure that you don’t have any bone deterioration and there will be routine bloodwork. I feel like I get the best medical care of anyone I know.
For the first year or so I felt like I had a great weight hanging over me, but as I began to relax and realize that I am benefiting from good medical care, that feeling went away. I live my life and live it fully, confident that in the unlikely event that I have progression, it will be caught quickly, and I will be treated.
Every time I see my hematologist/oncologist, as I’m leaving his office he says, “you’re good. We will watch and monitor and always remember that there have been great gains in the treatment of multiple myeloma so whatever happens, we can treat it.“
I find that very reassuring.
I think it’s important to find a treatment provider who has a great deal of experience treating full-blown multiple myeloma. They stay up on the literature and they are actively treating patients and getting more experience. They are busy guys and gals, but make sure that you write down all your questions and get answers before you leave the office. It’s really hard to get one on the phone if you think of something later. I even take someone with me to appointments because sometimes I get distracted by the minutia and I forget what I’ve been told. Make sure that you choose someone to treat you who is approachable with questions.
From your post, I know that your diagnosis is new for you so have you had a follow up appointment with your hematologist oncologist? We can all give you anecdotal information about our treatment and the perspective of our doctors, but it’s important to have a physician you can connect with so your questions will be answered by a medical professional.
Will you let me know how this is going for you and about your experience with your physician?