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Paraganglioma / Carotid Body Tumor Question
Hello. I was just diagnosed with paraganglioma and carotid body tumor. My doctor has referred me for a biopsy prior to referring me to Mayo Clinic. In my research, I have not found where Mayo's or any other site recommends a biopsy for this disease. I am also wondering if Mayo does recommend a biopsy, if they will want to do their own. So is having a biopsy done locally a) medically necessary and/or b) waste of time & money if Mayo will just do their own? I appreciate any knowledge or experience anyone may have on this issue. Thanks!
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SO glad to find this method of sharing! Was diagnosed w CBT in 'V' of carotid, Cia CT w/ contrast 44 DAYS ago, and confirmed w MRI w/ contrast 20 DAYS ago. After a dzn calls/texts w/ PCP, & 3 w/ ENT, still no calls, plans, nothing, after ENT said he'd call day after MRI. This is terrifying to me, as my father had a CBT that surgeons were unable to completely remove. And his mom died of throat cancer. Am leaning toward the research found that says these are sometimes inherited. My PCP said they'd come up w a treatment plan well over a month ago. I'm not waiting. Have contacted Mayo, gotten a patient #, sent my CT & MRI scans. Vascular dept has referred me to endocrine dept. Am awaiting further direction from Mayo. . . very anxious, nervous & scared.
How long does it typically take for Endocrine to contact new patient?