MGUS and understanding results

@angk welcome to the forum. MGUS sometimes progresses to Smoldering Multiple Myeloma. I believe that to differentiate between the two, technically, they have to do a bone marrow biopsy. This will tell you the percentage of the M protein in your marrow. Prior to that assessment, if your blood analysis numbers are low enough, your physician may go out on a limb and say that you have MGUS and not smoldering multiple myeloma. Your hematologist/oncologist may opt to defer the bone biopsy until your numbers rise significantly, and you reach a threshold of concern.
Have you been seen by a oncologist/hematologist yet? A lot of times a PCP does not have the expertise to be able to give you a definitive diagnosis. It would be unusual in my experience, and I am not a medical professional, for a patient to be given a “MGUS or smoldering multiple myeloma diagnosis.” A hematologist who is well-versed in the treatment of multiple myeloma and precursor conditions would say one or the other, if s/he can say with certainty.
I’m sure one of our good mentors can provide some very useful information. Ginger in particular, has some great links to articles that summarize nicely. The best source of information, however, is your actual physician. If you feel that your physician is vague or not specific enough diagnostically, I would encourage you to find a different physician. You need a doctor with unique specialization in multiple myeloma and who will answer all your questions. Ask for a return phone call or appointment and have a list of those questions that need more definitive answers.
Many times once someone passes the “smoldering, myeloma threshold,” like with MGUS, the treatment plan is to watch and wait. Actual treatment may not begin until there is more progression. I would want to know the plan for that. I would want to know which diagnostic tools the physician has used to draw the conclusion that you have either MGUS or smoldering multiple myeloma.
MGUS may or may not produce symptoms. It can be totally benign. Your physician will talk to you about the chances for progression, but for most, it is very low, and even if it does progress to multiple myeloma, the progress in the last 10 years for treatment has changed the paradigm. So don’t get caught up in some of the negativities you will read from Dr. Google and vet your research by reading reputable sources, and not so much what you will read from others on social media.
I think it’s quite normal when you were first diagnosed to be a bit panicked. I was diagnosed three years ago and my numbers are pretty stable although there has been some progression. I receive very good medical attention and have a hematologist/oncologist in whom I have good faith. My blood is drawn regularly, and he scrutinizes for any progression to smoldering multiple myeloma. So far so good!
In summary, the best thing you can do, for yourself is to find a competent, hematologist/oncologist, one who has treated many MGUS, smoldering myeloma and multiple myeloma patients. Ask lots of questions until your curiosity is satiated. Do seek fellowship from fellow travelers on this road. It helps to know that you are not alone. Don’t take on burdens however, that are not your own. We each haven unique subsets of this blood disorder. Some carry much more burdensome associated medical issues than others. Try and relax and live your life. One thing that this blood disorder has done for me is that I try and seize each day as an opportunity to live fully, and live well.
Hugs. Welcome to MGUS group.

First of all breathe, try to relax
Both MGUS and SMM are not cancer, although there is a chance but there is also a chance that they are not. The mind will always take you to the worst possible scenarios while there is a 50 percent chance in the next 5 years that nothing will happen to you either.
I wouldn't adopt the nonsense of "wait and see", it's a terrible find that has nothing in it: take control of life start the change now, especially dietary change and change in life, you have to understand that you live this moment now and you must do what you can with less fear, fear kills !

Hi @angk and welcome to Mayo Clinic Connect! As you wander through the discussions here, you will see there are many of us who have been on the MGUS journey. And, @pmm has lined out some great information. Many of us never progress beyond the MGUS stage [which is usually found when doctors are looking for answers to something else!] In my case, I am an overachiever. Diagnosed with Systemic Lupus in 1988, my immune system has taken me on quite a ride of conditions! In 2017 I was diagnosed with MGUS, in 2018 with smoldering multiple myeloma, and 2019 with multiple myeloma. Please, please, rest assured that my case is truly unusual, and we haven't met anyone who progressed so fast.

As Pam mentioned, if you do not have the services of a hematologist oncologist in place, please get one, who will help you monitor your situation, usually with quarterly lab work. While your primary care may be a good person, they usually lack the expertise needed for a specialty. And, it will really set your mind at ease over time.

Here is a link from the International Myeloma Foundation, that will explain the differences in MGUS and SMM: https://www.myeloma.org/what-are-mgus-smm-mm#:~:text=Patients%20with%20SMM%20have%20a,cells%2C%20kidneys%2C%20or%20bones.

Please reach out to us with any questions. Keep your life as stress free as you can, exercise moderately, eat healthily for your conditions, get good quality rest. Any questions?
Ginger

Thankyou so much. I feel like my blood results with the FLC ratio isn’t great and it’s to the smouldering stage 🥺

I understand. Insist on a talk with your doctor soon. Anxiety can actually raise your white count as though it is fighting off some infection and can actually make you feel sick.
Hugs.
Patty

Hi @angk, were you able to talk with your doctor? I'm hoping you got resolution.