Diagnosed with MGUS. What questions should I ask the hematologist?

I always tell people on here to get a baseline. Full bloodwork, 24/hr urine. Skeletal survey. Then depending on those numbers they may have you do a BMB. But don’t google doctor yourself, MGUS has a 1% progression probability a year. See if they want you to do bloodwork prior, if they say they will do it there ask to have a script sent because you would like it prior to your visit. (Less co-pays) lol. Give 7-10 days for a MGUS bloodwork results to post. Also, if your doctor has a specific lab in his/her office go to that lab outside the office because if you go to Quest and then you go to LabCorp, how they do their results differ.

Thanks. Your advice makes a lot of sense. It is clear this is the beginning of a learning process. My PCP of 42 years just retired so I am starting this with a couple of new docs but I feel good about the referral I got. Thanks again for your input.

I have a different diagnosis than you so you can look at my list and substitute your diagnosis and a few drugs being tried for your disorder. There are oncology doctors that specialize in your disorder. My last suggestion on the list was to ask about specialists. I would wait on that on until you feel you are not getting the care you want. I go once a year to Mayo Clinic to a Primary Myelofibrosis (PMF) specialist.
Hope this list gives you ideas for your list.

This is the list of questions I came armed with for my appointment with a hematologist:
What can you tell me about
Are there stages of PMF?
* What is my prognosis?
* How likely is it that my PMF will respond to treatment?
* What are my treatment options?
* Momelotinib (Ojjaara) was approved for medical use in the United States in September 2023.[31] It is indicated for the treatment of intermediate or high-risk myelofibrosis, including primary myelofibrosis or secondary myelofibrosis [post-polycythemia vera and post-essential thrombocythemia], in adults with anemia.[
* What types of research are being done for PMF in clinical trials? Do clinical trials offer additional treatment options for me?
* Do I need to start treatment right away?
* What follow-up tests will I need, and how often will I need them?
* Who do I call for questions?
* Have you had other cases of PMF
* What red flags should I look for in future to be concerned about.
* Should I seek a specialist

@genedoms I would add a couple that are specific to MGUS. Remember, MGUS is not cancer. we have members who are diagnosed with MGUS who have lived with that diagnosis for decades and it did not progress to smoldering or multiple myeloma.
What testing was done specific to the M paraprotein that triggered the MGUS diagnosis?
What were the results of that specific testing and what do those numbers mean?
If those numbers change, at what point will your physician become concerned that there is progression?
Does it make sense to get a referral to a specialist in multiple myeloma? (in my opinion that it should be a yes. You don't have multiple myeloma or cancer with an MGUS diagnosis, but you want to be treated by a specialist who is very conversant with multiple myeloma and treats it routinely. Think about a colonoscopy… You want somebody who does lots of colonoscopies rather than the guy or gal who does one or two a year, right?)
Specialists who treat MGUS see patients semi annually or annually generally speaking. You want to know how often you should be seen, but you also want to consider your comfort level and if your doctor says annually and you're not comfortable with that, negotiate being seen more regularly. You want your anxiety to be as low as possible because high levels of anxiety will also make you feel sick.
hang in there. All of us were understandably nervous after we were diagnosed and it takes a while, but hopefully soon you will feel more confident in your situation and you will be comfortable in your new baseline. Hugs!

Thank you for your response and advice. I have my first appointment with a hematologist on Friday. My retired longtime PCP and his partner who will be my new doc have referred me to a well credentialed and experienced specialist. Hopefully he will order the tests needed to establish a baseline and I will begin the education processes. I have had colonoscopies and endoscopies every 5-6 years since my first one at age 51 and in fact, I am due. My GI doc is part of the same group, has been seeing me for 25+ years and the group is great at sharing information. As I look at the test results that resulted in this diagnosis I am trying hard to get educated and not play internet doctor and self diagnose my condition but I clearly have a lot to learn. I am of course, nervous but have faith in my docs and hopefully will be in that category that requires monitoring and not treatment. Thanks again for your comments. Best.

@genedoms Your feelings are very relatable. We have all been there, anxious and apprehensive. I hope that soon you will feel great confidence in your provider and all your questions will be answered.
I'm so glad you found us.
hugs. please let me know how this goes for you.

@genedoms, how did your appointment with the hematologist go? What are next steps?

Thank you for asking. My appointment went great. The doctor is the head of the department and took all the time needed to answer questions from both my wife and myself. (My wife's mother died from her treatment for leukemia so she had that in the back of her mind as we met with the doctor.)At this point I am scheduled for updated bloodwork in a couple of weeks and then again in 6 months with a follow up appointment. Doctor indicated no need for the 24 hour urine test nor the skeletal bone scan at this time. He was also not concerned that my father who is 98 has cardiac amyloidosis being hereditary. He was impressed that my PCP had taken the extra steps in ordering the bloodwork that resulted in my diagnosis. I feel good, am really happy with my care team and thankful knowing the diagnosis could have been much worse. I want to thank everybody for their comments and advice which really helped me get prepared for my appointment. It took almost a month to see the doctor my PCP wanted me to see and he was actually not taking new patients but has a good relationship with my PCP and I definitely got to see him because of that relationship. Thanks again to all and I am very grateful I found this group. Interestingly the doctor referred to Mayo a number of times.

@genedoms This is a great report to read from you!

Having confidence in our medical team is important, and remember, you are one of those team members! It will go a long way to have everyone in communication with each other. If you have questions, write them down. Everyone's experiences can be a bit different, so reading here will be helpful, but may not always apply to your own situation. Being your own advocate is important. And it will help make things go smoothly for you.

I am looking forward to hearing more about your journey.
Ginger