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I am newly Diagnosed with MGUS.

Blood Cancers & Disorders | Last Active: Feb 6 5:38am | Replies (61)

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@katytx

Offering you a big hug as I have been where you are. I was diagnosed with MGUS 11/2021 after a CT Scan for another reason indicated an enlarged spleen. I was afraid when they referred me to an oncologist/hematologist as I immediately thought "cancer" and all that went with that word. Lots of bloodwork, bone marrow biopsy, 24 hour urine, and visits every 3 months, I'm now on a follow-up schedule for 6 months. I was the worst with Dr. Google looking for answers, but Dr. Google did not have my chart in hand and I have fired him. I had never heard of MGUS or understood its' precursors to more serious blood cancers, and now I am grateful for knowing, rather than not knowing. I'm no longer thinking about this 24/7 and waiting for the other shoe to drop--I know what to look for and have a medical team who will help me if I have any symptoms. At first, I was scared and my oncologist has talked me off the ledge a few times. Now, I keep a journal to track everything I feel, think, want to know, etc., and bring it to my appointments. Does the cancer thought ever go away completely? No, but I have taken more control of how I deal with it. As others have recommended, you may want to reach out to someone to talk about it to learn how to deal with these thoughts. Ask your Oncology Team to make recommendations to help find the right care. Also, I read this website daily to keep up to date and just stay informed. Congrats to you for taking the first step and being part of the community and sharing your story! Please stay in touch!

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Replies to "Offering you a big hug as I have been where you are. I was diagnosed with..."

@katytx brava! Yes I have concluded that it is the anxiety that impacts my health adversely. When I was first diagnosed my anxiety about the “what ifs” made me feel so sick.
I have learned to stay away from Dr Google. My Hem/Onc doc LOVES to go over data with me if I have questions. He lights up like a kid in a candy store as he scrolls through recent literature so I know he is diligent. In the three years I have known him I find him to be an easy read as he scrolls through the results of my quarterly blood draws. His face, last appointment, read that he is cautiously optimistic and I can be trusted on my own recognizance for a six month interval this time.
So I am LIVING my best life. I am enjoying friends, traveling, doing music, theater and keeping my family in touch with one another to the extent that one can with children and grandchildren who are moving targets.
Life is good and I don’t want to miss it because I am too entrenched in the “what ifs.”
In some ways, MGUS is a gift. I get excellent medical care and I have been reminded that life, no matter what your circumstances, is precious and far too short.
Live it!
I am going to the Barbie movie tonight with a dozen of the brightest, most accomplished women I know. We will all don our best pink and laugh and enjoy the humor and sisterhood. Frivolity!
Have a wonderful new week.
Patty