Diagnosed: MGUS

@amberl99
welcome to Mayo Clinic Connect's blood cancer and disorders discussion. Oh that Dr Google is such a glass half empty guy. I try to avoid him. It is pretty overwhelming when your first diagnosed. I'm so glad that you found a hematologist/oncologist who gives you timely information. There's nothing worse than reading "my chart" and then not being able to get a hold of your physician for days. That's both the beauty and the tragedy attached to electronic medical records.
It's been 3 1/2 years since my initial diagnosis and I have not yet had a bone biopsy and don't intend to unless my numbers get into arrange that my hematologist/oncologist and I have talked about would be of concern. It's sort of like "whew!" MGUS is not blood cancer and may never be as the statistics are in our favor. so understanding this has allowed me to move forward and live my life without giving it too much thought and very little worry.
I make good use of my time when I do have an appointment which right now is every six months. To do this efficiently, I write my questions down as I think of them and then take my notebook in with me to my appointments. At first I had lots of questions but now it's more an opportunity to briefly go over my blood work and schedule an appointment for six months. I also get bone scans once a year to look for any lesions that might develop and would be an indication that there may be progression to smoldering multiple myeloma or multiple myeloma. So far so good and I've had none. Even Dr. Google has to admit that the risk of progression is very low for most of us.
I'm so glad you found this discussion. It is helpful to know about the experiences of others. There's also opportunity to connect with others who are walking the same path.
Do you feel like you're getting all your questions answered in your doctor's appointments? Please let me know how this is going for you.

Hi Patty,
Thanks for your response. I was born with a congenital heart defect so being followed for life is nothing new for me. I am a little miffed as I’ve been so focused on my heart health that I didn’t see this little culprit sneak up. It does re-member me to stay in the present and one day at a time.

I am especially appreciative of your information on the yearly bone scans to look for lesions. I will inquire about what my hematologist’s thoughts are on that for me.

I do have a question you might know the answer to. It’s regarding low risk vs high risk. I read less than 1500g (of something, can’t remember name) is low risk but 1500 and above is high risk. My number is 1500. I’m at the high end of low and the low end of high (so aprospo). Do you understand how the risk is assigned?

I’ll keep reading the comments. It is really good to hear other’s experiences with this. Sometimes doctors don’t educate like I wish they would. I kid you not, once my hematologist gave me the name of the diagnosis, he then said I can read about it on the internet! I mean, I get it, with the sick patients he sees I get it. But a few minute synopsis from him would have been more valuable and reassuring to me than Dr Google.

Thank you,
Amber

@amber199
Amber I'm really sorry that you had that experience with your hem/onc doc.
Some of the best doctors I knew during my career as a medical social worker were excellent diagnosticians and treatment guys and gals but a little on the low end with bedside manner. Some were a LOT on the low end of bedside manner.
When choosing a doctor for myself I looked for clinical excellence and experience rather than personality so I do a little bit of filling in the blanks when I work with my guy.
There are a lot of factors that mitigate answers to your question. We are also so different and although many of us have lived with this diagnosis for years...some decades, we are only experts about our own treatment. So I'm going to frustrate you probably by giving you some more stuff to read. I do this not because I think it will answer your questions but because it will help you to formulate questions you want to ask of your hematologist/oncologist person. During my second session with mine, I went in the appointment with nine typed specific and complex questions. Number one was "what does the M protein indicate? Is that calculated in a range? And "protein in the gamma region at .3 G/DL...what the heck does that mean?"
He gave me a look that I read as "OK I'm going to need more coffee." but he patiently answered all of my questions.
What I've learned since then is that he also pays attention to my coexisting conditions which include type two diabetes and Celiac disease. He also has lots of questions about diet, exercise etc. I'm a 72 year-old woman so that factors in. Those are all mitigating factors in determining exactly what will zap me and when.
Stratifying risk is complicated and it really should be a conversation with your doctor.
Someone somewhere told my physician that he should end every session with a positive and he does. He says every time "in the unlikely event that this progresses to multiple myeloma, multiple myeloma is now very treatable as many gains have been made in the science in the last decade."
Every time he smiles at me as though this is new information and I'm just hearing it for the first time, so I respond accordingly. It's our little dance and I think I would miss it if he stopped. My husband thinks we're both crazy. 😂
I'll post a link in the comments.
Patty

@amber199
https://consultqd.clevelandclinic.org/risk-stratifying-patients-with-monoclonal-gammopathy-of-undetermined-significance

A very good article. Thanks.