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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: Nov 29, 2024 | Replies (116)Comment receiving replies
@shanda Do NOT let your doctor do a biopsy. Paragangliomas can get very “angry” and most doctors that have any experience with them know this. My vascular surgeon at Mayo is Dr. Bower and I would highly recommend him. Get your referral and let Mayo take it from there. Almost all testing that I had done previously was done again by the Mayo doctors or under their supervision. If you are on Facebook, search for a group called Pheochromocytoma and Paraganglioma Support Group. There is so much helpful information there! And if you want to contact me directly I would be happy to answer any questions you have. I wish you the best of luck! At Mayo you are in good hands!!
Replies to "@shanda Do NOT let your doctor do a biopsy. Paragangliomas can get very “angry” and most..."
@sharik
I'd like to know how your experience w carotid body paraganglioma removal went as well! I am a patient at Mayo in Rochester, and will be returning in April for an eval to see if there are any changes to my small tumor on bifurcation of my right carotid artery. I am a patient of Dr Bancos, Dr Moore, and Dr Link. Initially, Dr Bancos ordered the 24-hr urine test, blood draw, PET scan, and genetics mtg. They had seen my CT w contrast & MRI w contrast I'd had done at home.
I'd like to know if you are tumor free, if you had any pre-surgical hormone "balancing" to do, if you have any followups still, if you are on meds, etc. There are so few of us, and the waiting is the hardest part b4 having the Thing dealt with! /s/ @gangcarotid1
P.S. THANK YOU, @colleenyoung for opening this thread! Have been terrified to not hear of anyone else w this except recently @msmith49
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@colleenyoung thank you for tagging me!