[Worriedinwisco]

MGUS diagnosis at age 36 - panicking

by Worriedinwisco on Tue Apr 29, 2014 3:29 pm

Hello all,

I am a 36 year old female diagnosed two weeks ago with MGUS. I have been so paralyzed with fear that my general physician prescribed anxiety medication today.

Two weeks ago, routine blood work (ordered because I take high blood pressure medication) showed elevated protein. I was referred to an oncologist (panic!) and I had further bloodwork and a CT scan. The CT showed a slightly enlarged spleen and some lymph nodes at the higher range of normal. Some blood results of note:

Lab Results:

Monoclonal protein in gamma region = 0.5 gm/dL
IgM kappa monoclonal protein present
Total protein = 8.7 (6.0-8.2)
IgM = 613 (53-334)
WBC count = 11.7 (4.6-10.8)
RBC = 5.06 (4.04-5.5)
HGB = 15.4 (12-16)
Neutrophil = 88% (37%-80%)
Creatinine = 0.80 (0.50-1.10)
Globulin = 4.3 (2.0-4.0)
Albumin = 4.1 (3.4-5.0)


Oncologist suggested a follow up CT and blood work in 3 months. I was clearly very upset by all of this, and in my opinion, I felt she was dismissive, so I am seeking a 2nd opinion at a university cancer center. Currently doing the 24-hour urine collection, and having additional blood work tomorrow in preparation for my second opinion next week.

Here are my questions/concerns:

1. Since my MGUS diagnosis, I have been researching this site and elsewhere on the web nonstop. What I am seeing is that an MGUS diagnosis almost inevitably leads to active myeloma. Yes, I know much of what I am reading is anecdotal, but still...that "1-2% per year" statistic seems waaaaay low. Am I imaging things?

2. I know this is also anecdotal, but it seems as though many, many people are diagnosed with multiple myeloma that have a relatively low M-spike. Like, under 1.0. Again, am I imaging things?

This was long, so thanks to anyone who finished reading!

[Multibilly]

Re: MGUS diagnosis at age 36 - panicking

by Multibilly on Tue Apr 29, 2014 4:17 pm

Take a deep breath here.

Your numbers are indeed low.

The risk of progression from MGUS to multiple myeloma is really on the order of 1% per year. This isn't an "anecdotal" figure. It's the result of scientific tracking of individuals over time.

Getting a PET/CT is actually the next logical step in determining where things are at, if MGUS is suspected.

Having said this, a second opinion is always a good thing to get. Doing a 24-hour UPEP and getting a Freelite assay would help compete the picture.

But one thing to consider here is that your "involved immunoglobulin" is your IgM. IgM-involved multiple myeloma is pretty rare. This is a "potential" flag that this could be an early stage of Waldenstrom’s Macroglobulinemia (WM) instead of MGUS. You need a bone marrow biopsy to confirm if WM is involved here and you should be discussing this with your doc. A bone marrow biopsy is a pretty simple out-patient procedure.

If you are going to get a second opinion, seek out a hematologist that specializes in multiple myeloma. This is the single most important thing you can do. If you don't know where to go, folks on this site can help if you let us know what city you are in.

If it turns out to be MGUS, it very easily may not progress and never require treatment and you would never be any worse for the diagnosis. Lots of people go through life with MGUS and never even know they have it.

[Dr. Ken Shain]

Re: MGUS diagnosis at age 36 - panicking

by Dr. Ken Shain on Wed Apr 30, 2014 8:12 pm

It is difficult to comprehend any new diagnosis, as anyone who reads or posts on the Beacon can tell you better than me. It will be important to slowly start learning a new normal for you. Things have changed, but with what you have posted, it will involve just more clinic visits and labs for now.

It does appear that you do have an IgM MGUS -- a pre-malignant condition that does carry a risk of progressing to an active malignancy, one that requires therapy. But it does not now. And expectant management is the key. Further, not everyone who has MGUS progresses to malignant disease.

I agree that It is very important that you seek a second opinion at an academic center / referral center with specialization in plasma cell dyscrasias / diseases and where you will obtain further testing -- bone marrow biopsy, bone survey, and other monitoring.

Please keep us updated.