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I have MGUS

Blood Cancers & Disorders | Last Active: Apr 14, 2023 | Replies (56)

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@hels

Hi i have just been diagnosed with mgus my head is spinning could some one answer a few questions i didnt think to ask at time my next blood test is june but i go on holuday in march do i need specialist insurance also do you need to inform your life insurance has anyone had this for years without it progressing thanks in advance x

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Replies to "Hi i have just been diagnosed with mgus my head is spinning could some one answer..."

You do not have cancer. MGUS is not cancer. Now if it progresses that’s a different thing. Unless you’re filling out an application for life insurance, you do not need to include that information. It’s really none of their business. Life insurance does not exclude. MGUS or even cancer.
When I was first diagnosed, I was very anxious, but over a year later, it’s not something that I even think about too much. I go to the doctor every three months for blood draws, and consultation. Other than that, I’m not impacted on a daily basis.
I’m so sorry that you have the worry of a MGUS diagnosis but in the unlikely event it progresses, multiple myeloma is treatable.
Stay away from Dr Google. He is such a downer.
Find a really good hematologist/oncologist.
Get your blood draws regularly and talk to your doc about the results then live your life.
Patty

I was diagnosed with MGUS in 2014. It remained latent until about 18 months back and two markers, Free Kappa light chain and igM , have escalated. I don't meet the criteria of multiple myeloma and thus no treatment is planned. My situation has been complicated by chronic leukemia and acute promyelocytic leukemia along the way so I have not focused too extensively on the MGUS. I understand you are probably overwhelmed now. I would suggest trying to get in front of a lymphoma oncologist . From what I read, MGUS can remain latent for years but nothing is more assuring than good numbers from semiannual blood tests. Try to educate yourself thru Mayo Connect, Leukemia and Lymphoma Society(www.lls.org). Best of luck.