Hello Marie, @honeybeemarie
It is confusing. At least it was for me. I’m so glad you found this group. Here is a Mayo Clinic article on MGUS that was helpful.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
I think the best resource for information is a real comprehensive chat with your physician. There are a couple of questions I have. How are you diagnosed with MGUS and by whom? For most of us who are diagnosed, the M protein in our blood was found accidentally when they were looking for something else. That means it’s usually not a hematologist/oncologist who gives the initial diagnosis. So if it’s your PCP, you will likely get a referral to a hematologist/oncologist. For me, the most important thing was to find one that I felt comfortable with. I wanted someone with a lot of experience in treating multiple myeloma and what sometimes turns out to be precursor conditions of MGUS or smoldering multiple myeloma. I also wanted someone who was patient with my questions, made sure that I had all the information that I needed to make informed decisions and was available to me by phone or appointment within a reasonable period of time.
Almost always, with MGUS, it is a monitor and wait regimen. MGUS is not cancer. In fact, the odds of it becoming cancer are in our favor. Your physician will have you come in for blood draws on a regular basis to check to make sure that your MGUS is not progressing. My physician orders bloodwork every 6 months now since my “numbers” are stable. Annually he orders a CT to scan my bones for bone lesions. Some do a 24 hour urinalysis. Your doc may order a bone biopsy. All of this is to ensure that there is not progression that goes unnoticed. Downside is that it’s natural to feel anxious about this new wrench in the works. Upside is that you get excellent medical care.
Try not to be anxious. Schedule a time to talk to your doctor either on the phone or better yet, in person. Write down your questions and make sure that they are all answered. Ask for referrals for a hematologist/oncologist and ask friends and others who may have experience with these specialists. You want to find one that meets your requirements. Stress is an enemy. Don’t let it debilitate you. I try to eat well, sleep well, and stay in the game. We travel, have fun with friends and family and embrace life. Carpe Diem, y’all.
Again, welcome to the forum. There are lots of good people here with great mentors. I always learn from the experiences of others.
Have a good weekend.
Patty