Hello,
I was just diagnosed with MGUS by a non-specializing hematologic oncologist. I've tried to be seen by a myeloma specialist, and my GP sent all my test results to one (at my request) for evaluation. This myeloma specialist did not accept my referral, because he said that my case is benign: all tests within normal range except slightly elevated IgG kappa, less than 1 g/L (0.1 g/dL).
The only test I haven't had yet is a bone marrow biopsy.
One non-specializing internist told me that, given my young age (40), and that the rest of my labs are good and my M-spike is minimal, I may not find a hematologist here in Ontario willing to do a bone marrow biopsy on me.
I'm nervous, because from everything I read, and everyone I talk to, I hear that even with an MGUS diagnosis I need to be seen by a myeloma specialist. I'm somewhat reassured by the fact that an myeloma specialist saw my labs and other tests, but is it enough? Do I absolutely need an myeloma specialist to see me face-to-face and re-run all of my tests?
Thanks in advance!
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Re: MGUS with small M-spike: do I need a myeloma specialist?
Given that your M-spike is so small (indistinguishable from 0 given the accuracy of M-spike measurements), given that your other lab results aren't raising any red flags, and given that a myeloma specialist already has said that you don't need a bone marrow biopsy given your existing results, I really don't think you need either a bone marrow biopsy or an additional consultation with a myeloma specialist.
You do want to make certain you have had a serum free light chain test, and that you've had your hemoglobin, serum calcium, and serum creatinine levels measured and reported to you. Ditto for your immunoglobulin (IgG, IgA, and IgM) levels.
A serum immunofixation test also is advisable, but it seems you've already had one, given that your M-spike was classified as IgG kappa. Only a serum immunofixation test would tell you what sort of monoclonal protein you have in your M-spike; the serum protein electrophoresis (SPEP) test tells you the size of the M-spike, but not what sort of M-spike it is.
If you've had the tests I've mentioned, and none of them are indicating your M-spike is a sign of disease that is impacting your body in a noticeable way, then a bone marrow biopsy at this point is not critical. What you should start doing, however, is tracking your M-spike, serum free light chain levels, and other disease markers, and get these measured every 6-12 months.
One other point worth mentioning is that, with the sort of M-spike level you have, and given your age, it is possible that your M-spike is a fluke. It may be the result of an infection, or some other transient condition. I don't want to suggest that this is likely, but it is entirely possible given how very small your M-spike is (and assuming your other myeloma-related markers are in normal ranges).
Good luck!
You do want to make certain you have had a serum free light chain test, and that you've had your hemoglobin, serum calcium, and serum creatinine levels measured and reported to you. Ditto for your immunoglobulin (IgG, IgA, and IgM) levels.
A serum immunofixation test also is advisable, but it seems you've already had one, given that your M-spike was classified as IgG kappa. Only a serum immunofixation test would tell you what sort of monoclonal protein you have in your M-spike; the serum protein electrophoresis (SPEP) test tells you the size of the M-spike, but not what sort of M-spike it is.
If you've had the tests I've mentioned, and none of them are indicating your M-spike is a sign of disease that is impacting your body in a noticeable way, then a bone marrow biopsy at this point is not critical. What you should start doing, however, is tracking your M-spike, serum free light chain levels, and other disease markers, and get these measured every 6-12 months.
One other point worth mentioning is that, with the sort of M-spike level you have, and given your age, it is possible that your M-spike is a fluke. It may be the result of an infection, or some other transient condition. I don't want to suggest that this is likely, but it is entirely possible given how very small your M-spike is (and assuming your other myeloma-related markers are in normal ranges).
Good luck!
Re: MGUS with small M-spike: do I need a myeloma specialist?
Thanks so much, Cheryl. This confirms what I've been hearing, and I will follow your tips.
The reason my elevated light chains were found is that I got extensive blood testing for chronic fatigue syndrome (aka myalgic encephalomyelitis). I've read that people with chronic fatigue syndrome have been known to have elevated light chains. I've also read that we are at an increased risk for certain blood cancers. So I'm still figuring out how vigilant I need to be, how to live life in spite of this, and how to educate myself and my doctors at the same time. It's not easy to find this balance with the diagnosis being so new, and without knowing which issues are critical / urgent versus those that are less so.
The reason my elevated light chains were found is that I got extensive blood testing for chronic fatigue syndrome (aka myalgic encephalomyelitis). I've read that people with chronic fatigue syndrome have been known to have elevated light chains. I've also read that we are at an increased risk for certain blood cancers. So I'm still figuring out how vigilant I need to be, how to live life in spite of this, and how to educate myself and my doctors at the same time. It's not easy to find this balance with the diagnosis being so new, and without knowing which issues are critical / urgent versus those that are less so.
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