Question to ask about MGUS Diagnosis

@bens Welcome to Mayo Clinic Connect.

You're so right, this can all be overwhelming as you learn about a new-to-you condition. First thing i would say, and many may agree with me, is to not go to "Dr. Google", where you may get more confused and intimidated! At the end here i have posted a couple of links for you to peruse that offer solid information.

I was diagnosed in 2017 with MGUS, and due to my overachiever personality [!] it morphed into smoldering multiply myeloma [SMM] in 2018, and from there to multiple myeloma in 2019. The vast majority of people don't take that route, though, and go for years on an MGUS diagnosis, with monitoring every three months. Learn to understand your labwork and the results. Ask your doctor how they can best guide you, what are their thoughts as to your particular situation. For me, I have other health issues that combine to make my situation a bit more challenging to my medical team. Be your own advocate, write your questions down. If possible, have another person there with you who can catch what you miss. While you are processing what the doctor is saying, your mind may miss the next few thoughts. Take note, aske questions, ask for answers to be repeated if necessary. A doctor usually like to see their patients play an active role in their healthcare!

From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
From John Hopkins Medicine: https://www.hopkinsmedicine.org/health/conditions-and-diseases/monoclonal-gammopathies

Please let me know if I can answer any questions for you?
Ginger

Thank you for answering. I read what you sent and also sent sites to my daughters, who are my support team. My daughter in SC (I'm in another state)wants to be with me at my next appointment by cell phone if possible so she can listen and ask questions also. She works in the medical field and seems to understand things better than me. Thank You again

@bens Good for your daughter to be present, even if only by phone. Having some medical background, she will pick up on things and be able to support you in this. Personally, I do not see any problem with having her on the phone. My husband has sat in the car while I was in an appointment, and listened in while I was with the oncologist.

Between now and your appointment, take time to relax. Take time to write down questions. Don't "Dr. Google"!!! If you are not someone who journals, or writes out your feelings, now is a good time to consider starting that. I have found it to be invaluable to keep my emotions and concerns in check, in all manner of things. Here is a good place to start: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Ginger

Greetings from Arkansas. I was diagnosed about 6 months ago. It sounds like most people get labs quarterly to monitor what, if any progression there has been since the last labs. Mine has not progressed for which I am grateful. I have opted not to have a bone biopsy yet as the “watch and see” is the same for MGUS as it is for smoldering MM.
I find that anxiety impacts my health so let me repeat what the others have said and don’t Dr Google. You will focus on possible bad outcomes and statistically, only a small percentage of MGUS pts progress to Smoldering MM or MM.
I am asymptomatic and hope to remain so. If there is any sign of progression, I’ll “enjoy” whatever treatment is offered to stay kicking.
Take good care of yourself.

I was diagnosed 10 years ago with MGUS and was sure at each appt for awhile they would tell me I had progressed. You relax into after awhile as you better understand it and when under the supervision of good doctors. First, consider getting a myeloma specialist in addition to your local hematologist unless you are lucky enough to live in a community with a comprehensive cancer center or top notch medical center. A Dr at Mayo actually gave name to our condition and they continue to be among the best doing research. If you decide to have a baseline bone marrow biopsy, being at a high volume center matters. I have had 3 now at Mayo and it really isn't bad at all when done by skilled hands. Just some lidocaine and a little pressure and it's done! Dana Farber has a study going on you might want to be a part of as they are working hard to figure out how to prevent progression. All you do is have a little extra blood drawn at test time and overnight it. They provide everything and it costs nothing. I do research because it empowers me, but have been a patient advocate so long I knew what is credible and of merit. Remember trends are more important than a single result. My recommendation for a question to your Dr is how many MGUS patients do they see? Some still don't know what it is. I'm lucky to have a primary care Dr, a local hematologist and a myeloma specialist who are well-versed on this. You or your daughter would have to Google it, but there is one medical journal article I can't cite for you that provides guidance to doctors as to how MGUS patients should be monitored. If you have a Dr who isn't very familiar, it might be helpful. I will close by saying that while the diagnosis can cause some stress, data shows that we are better off knowing in terms of longevity. Myeloma is caught sooner as are other cancers on the whole since we are hopefully seen regularly. If I can provide any insight for you, please don't hesitate to reach out or have your daughter do so 🙂

Thank you for your post. Before I could get into see my hematologist/oncologist, I was obsessing about worst case scenarios. My doc put me more at ease and today marks my third round of bloodwork that is almost identical to previous results.
So I go back in three months.
I find that anxiety is a worthy adversary. If one can remember that this condition will likely lurk, not pounce, you can go about your life and enjoy.
10 years gives you tenure one would think. Congratulations!

I feel better reading these post from people that are in the same situation with this wait and see. I try and stick it in the back of my mind and not worry.
One thing that is curious how many medical people don’t know what MGUS
is. Having cataracts taken off in August, Doctor didn’t know what MGUS was
on my history. Told her to look it up. Will inform my hematologist if there is a reason to worry about MGUS and cataract surgery. Also in the future, knee
Replacement.
I go to the UW Wisconsin West Clinic, don’t know how they rate with MGUS, I’m fairly knew at this, have seen him only twice.
I’m wondering if they will work with Mayo, don’t know how to go about that.
Thanks for listening or reading.

I’m in Little Rock Arkansas and although the University of Arkansas for Medical Sciences has a whole multiple myeloma department complete with brand new building, state of the art facility… I couldn’t get them to even acknowledge my PCPs request for an appointment. I waited, called, had my PCP call…it was very frustrating. And, it made me worry that this was the level of attention I would receive if I were a patient there.
So I made an appointment at CARTI…cancer treatment center. I was able to get in and my physician Hem/Onc doc, is well trained and seems quite competent. I am content to continue to wait and watch. I guess if this advances to smoldering multiple myeloma or certainly multiple myeloma I will have to weigh my options. I think I would probably go to the mayo clinic as a second opinion or transfer my treatment there. There are so many variables. So many people on this blog are very knowledgeable and I certainly am not so I learn from them. I read, but not enough to get overwhelmed. I watch my blood work and it has been very consistent. I have no M protein in my urine and my bones look good from the scans that they have done. That’s good enough for me right now!
I think it’s good to know that you’re not alone in this and that there are other people all over the country who are struggling with the same questions that we have. I read every post and every response and it helps me stay centered. I don’t want this to define me.

Best of luck! And thanks for your post.

@pmm You're right. Sometimes we are not able to get in to a desired medical facility, for varying reasons. I am glad you and your doctor chose to pursue another avenue, and that you're pleased at this point. We definitely need to advocate for ourselves at all times, even when we feel overwhelmed and confused.

Each member here on Mayo Clinic Connect has their own journey. We can each learn from each other, and also demonstrate what has worked for us. It's so important to remember what works for one may not work for another. We are not in the shoes of another member. For me, I applaud others and their pathway, and shake my head in wonder how everyone comes together to support everyone else! Like you, I don't let my conditions define me!

When is your next appointment?
Ginger

Tuesday! They drew blood yesterday. Looking forward to getting that over with for another three months. Fingers crossed.