1. < Neuroendocrine Tumors (NETs)

NET symptoms despite follow-up lab work ok

Posted by pippa05 @pippa05, Jul 3, 2023

Has anyone experienced NET symptoms ie diarrhea, morning vomiting, nausea, headaches while lab work is all within normal range? I had net in ileum diagnosed 8/2021 which was removed by endoscopy. My lab work was fine and CT scan fine a week prior to finding NET. Every 6 mos my oncologist says "your lab work is fine" to which I reply "I wish I felt as good as my lab results" and his response is "see you in 6 mos." I had my one year endoscopy in 2022, which was fine and this year's is scheduled in Sept. I know I am lucky when I read what all of you are suffering thru. My company is allowing me to work from home because I am too sick to commute, I need immediate access to bathroom. I am not complaining, but I am curious as to whether or not anyone is experiencing the same thing? I take anti anxiety medicine because my anxiety has GI side effects, my primary doctor just increased the dosage. I've seen an assortment of doctors to determine if anything other than NET is going on, my nutrition is very good but symptoms are getting worse.
I keep all of you in my prayers, God bless.

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phyllisden | @phyllisden | Dec 18, 2023
In reply to @terlato "I tried getting an appointment with the Mayo Clinic. They don’t take my Medicare plan. I..." + (show)
@terlato

I tried getting an appointment with the Mayo Clinic. They don’t take my Medicare plan. I was told they don’t take Medicare at all and do not take cash paying patients. So you have to have a great insurance they can use for all consultations and test. I wish they would post that on their site!

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@terlato, Sorry to hear that you're having these frustrations in addition to dealing with the disease.
I went to Mayo in Phoenix in 2021 for PRRT and was initially told something along the same lines you heard. However, Medicare and Tricare for Life paid everything. On Mayo's website under "Frequently asked questions", it's very clear that all their programs are Medicare approved. They recently sent out a letter concerning some Advantage plans are not approved.
My experience could not have been better, so I would encourage you to talk to someone else at whatever location you would want to go to. And look this information up on their website so you can use that should you need to.
Good luck.

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lindabees | @lindabees | Dec 21, 2023
In reply to @terlato "I tried getting an appointment with the Mayo Clinic. They don’t take my Medicare plan. I..." + (show)
@terlato

I tried getting an appointment with the Mayo Clinic. They don’t take my Medicare plan. I was told they don’t take Medicare at all and do not take cash paying patients. So you have to have a great insurance they can use for all consultations and test. I wish they would post that on their site!

Jump to this post

Correct. Mayo doesn’t take any Medicare Advantage plans, however, they take original Medicare and Medicare supplement plans. All of my husband’s care has been covered by Medicare

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