@amyboylan1
Hello and welcome to the blood cancers discussion. MGUS is not cancer. That’s the good news. The chance of progression to blood cancer is also good news because it’s very small.
https://www.healthline.com/health/how-serious-is-mgus
We are each different, of course and we do have some overachievers in our group, but for most of us, we deal with MGUS as a watch and wait condition that does not require treatment.
Your hematologist/oncologist will do blood draws on a regular basis (I started out as quarterly and now every six months). You’ll also get regular scans of your bones to ensure there are no lesions. Some get a bone marrow biopsy to establish a baseline of how much of that M protein is in your blood marrow. This also helps a physician to differentiate between MGUS and smoldering multiple myeloma.
I was diagnosed with MGUS three years ago. When I was first diagnosed, I was very anxious about it. I read everything I could get my hands on and listened to the negativity of Dr. Google. It actually made me feel sick. My white count shot up and I just didn’t feel well at all. Once I talked to my physician and read more balanced information that he provided, eventually found Connect and talked to other MGUS patients, I was able to calm down.
Three years out I don’t think much about the diagnosis. I feel good and I’m active and optimistic that this condition will stay stable and see me through the next decade or so. At age 72 I tend to be a bit pragmatic about it.
I’ve learned a few things about dealing with the healthcare arena. It’s important that you have a physician that you have confidence in. MGUS is best treated by a hematologist/oncologist. I want a specialist who has lots of experience in treating multiple myeloma. I hope that it never gets to that point but the gains that have been made in the treatment of multiple myeloma over the last decade are pretty phenomenal and it is very treatable.
I also want to understand my diagnosis thoroughly and I want to partner with the physician and making decisions about my care. So finding the right doctor was very important for me. Quite honestly, I did not get my first choice, but that may have been serendipitous because I am very happy with my care team. I ask lots of questions and I want someone who is current on the recent research. my physician checks off all those boxes.
So when you say that you were recently diagnosed, have you had a chance to sit down and talk to your doctor? Do you know what your plan will be for your medical care? Would you mind sharing this with me?