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Bone marrow biopsy and/or blood tests for MGUS
Blood Cancers & Disorders | Last Active: Jun 1 1:42pm | Replies (15)Comment receiving replies
Hello all,
I was diagnosed with MGUS in June 2023 and I've got some questions for anyone willing to answer. I've been reading posts on here about people with MGUS having bone marrow biopsies done. Others that see their Hematologist every 3 months, some who see theirs every 6 months. Can I ask those that have had the biopsies done, what precipitated you into having the biopsy in the first place? Was it a progression of your MGUS? Was it at your request or your doctor's? When I was diagnosed, the doctor I had, who I did not like, told me I had nothing to worry about that my MGUS probably wasn't going to progress into anything further. This same doctor also told me that I would test negative for a Free Light Chain Test but he was going to run it anyway. I told him not to speak too quickly because I would show him otherwise. Which I did. I tested positive, but that didn't seem to faze him or change his diagnosis or outlook on me and my situation. It is time for me to go back for a follow up appointment and I've been granted a different doctor (undetermined at this time) to see. Can I also get opinions as to whether or not you guys think I should ask for a completely new work up by this new doctor so it is an unbiased diagnosis? Or?? I don't know what to do or ask for or expect....I need some good solid advice and help, no one around me has the answers as this isn't something they've dealt with. Thank you in advance for your help, knowledge and understanding with my many questions....I do sincerely appreciate any and all help and advice.
Replies to "Hello all, I was diagnosed with MGUS in June 2023 and I've got some questions for..."
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@newfiesgirl1 First, welcome to Mayo Clinic Connect. You will find differing experiences and opinions here from fellow patients. We seem to have a variety of medical professionals that we work with, and that comes along with a variety of the ways we are treated!
First question I have, is if the doctor you have seen is a general practitioner, or a hematologist oncologist with experience in MGUS? That, to me, makes a difference. I was first seen by an oncologist with some hematology experience. Unfortunately, she did not have the background I needed for a comprehensive care of my case. On the fortunate side, it was at the time of a move 800 miles away, and I am now with a Mayo Clinic trained doctor, who specializes on blood cancers.
Seeing a new doctor, let's primarily make sure you are in agreement with your treatment plan and his/her outlook for your care. The test is the same test. Make sure you have a list of questions to propose; you have already put them in this latest post! Ask this new dr if a repeat of any test is warranted, or if any new ones should be ordered. A three month follow-up is not uncommon. A bone marrow biopsy is not uncommon, to establish a baseline, and may be repeated as symptoms or tests might indicate. Yes, MGUS can remain stable for a long time, but consistent monitoring is important.
Healthful eating, moderate exercise, reducing stress, and following suggestions by your medical team are all good guidelines. And if you have any other health issues/concerns, staying on top of them is always beneficial. In my own experience, my medical team has appreciated that I want to have an active role in my own health. When there is information to be had, I want to read about it!
The International Myeloma Foundation http://www.myeloma.org has a lot of great resources to check out! And we are here for you to ask questions. It makes the journey easier to know we are not alone, doesn't it?
Ginger