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I agree with you. Unfortunately, the specialists in my system do not. They wanted 2 tests within 6 months and then every few years! I pushed for a 3rd test and if numbers are not changing then I'll concede to annually. My PCP does talk with the specialists and has been supportive but I do notice some holes in her knowledge. I'm trying to be patient but it's a gatekeeper system so I have to play the game for a while.
Replies to "I agree with you. Unfortunately, the specialists in my system do not. They wanted 2 tests..."
@mikxtr How frustrating! Not sure which specialists these people are, but if not a hematologist oncologist, please try to connect with one. As you have read, MGUS can be a no-to-slowly growing issue, and many people go many years without any advancement of disease status. But, it needs to be monitored.
In my case, I connected with a well known hematologist oncologist in the town where I lived. She had me testing every 3 months. Then decided to extend it to 6 months. And, during that time, I advanced to smoldering multiple myeloma. I would like to think she was very upset it fell through the cracks. Truth was, I was just on the cusp of moving 800 miles away, so she handed me off to my new oncologist. He is Mayo Clinic trained. He was concerned about the details of my case, and being the overachiever I am, within a year my situation advanced into active multiple myeloma. Very unusual, so please don't let this scare you.
Play the game you need to do, and keep pushing for your healthcare!
Ginger
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Ugh I hate dealing with insurance and managed care. I’m glad you are diligent and doing good research. Fingers crossed for a good report next appointment. Let me know how it goes.