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Replies to "Hi, I am 50 years old, I recently did a blood test that showed I had..."
Welcome to the blood cancers and disorders discussion @kaiti
When meeting with your oncologist regarding MGUS, focus on understanding the condition, its risks, and your individual monitoring plan. Ask about the likelihood of progression and what benchmarks your physician will look at to monitor this, what tests are needed, and How often will you need follow-up appointments.
you might also want to discuss any coexisting conditions and how they might impact your care. Are there any medication's that you're taking that your hematologist/oncologist needs to be aware of?
I think it's also important to have a discussion about how you would like to communicate with your physician. Do you want to be called if there are any concerning lab results or findings that need attention or would you rather wait until your scheduled appointment to discuss this? Do you habitually look at "my chart" to read your reports or do you wait to look at them with your physician? You know your self best and you know what you're tolerance for anxiety is like. Think through that carefully before you have that discussion.
I personally don't recommend getting your lab results or scan reports and jumping right into Dr. Google. That is the road to madness.
And I say this from personal experience. practice about 1 million times what MGUS stands for because even medical professionals will ask you what it is. 😳
i'm sure other members have tidbits from their own experience and I hope they jump in here.
I've got my first hematologist appointment next week, and I intend to ask whether the MGUS may have any impacts on any of the other medical issues I've got going on, or whether any of those issues or their actual/potential treatments might have ramifications for the MGUS.
At this point, I've got a multi-page table tracking my various medical issues: upcoming appointments, notes/questions for the appointments, past appointments, outcomes from past appointments, drugs, side effects of the drugs, actions I've taken to manage the side effects of the drugs, non-traditional stuff I've tried, etc. Really, it's a journal in table format. Because I've given up entirely on being able to hold it all in my head.
The medical community operates in silos -- not their fault, it's just how it is. But the human body/mind is not made up of silos -- it's an integrated whole. Expecting my excellent but overworked PCP to coordinate all that effectively is just absurd. So these days, when I see each physician (let's see -- at the moment, it's seven of them plus, of course, my pharmacist), I try to encourage them to think about the consequences of each diagnosis/treatment on all the other diagnoses/treatments.
I'm 72, I'm living a quite engaged life, and I am not my diagnoses. Since I want to hold onto that as long as possible, doing my best to help my medical providers operate as a team has become one of my priorities. Because it's really hard for them to do that if the patient isn't actively helping.
I recently asked my migraine neurologist to take a quick look at several possible insomnia drugs I planned to discuss with my PCP, and she flagged one that she routinely uses off-label with success as a migraine preventive. You never know what can pop when you try to be somewhat holistic about things.