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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: Jun 30 7:27am | Replies (115)Comment receiving replies
My tumor did not secrete. I don’t remember what “normal” numbers are now, but my labs were never out of range. I did the 24 urine test twice - once with my primary and again with the Mayo lab, and both were fine. I also did an endocrine test before my surgery and that was good as well. My tumor was thought to be a CBT but ended up being vagal instead. Not sure if that makes a difference or not. Good luck!
If you are on Facebook, there is a group called Pheochromocytoma and Paraganglioma Support Group. There is a lot of great information there.
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Thank you Sharik! Extremely dumb question. Have you heard of Shamblin grades? If tumor is wrapped 180 degrees or less around the artery it is grade 1, 180 - 270 degrees is grade 2, all around 360 is grade 3. More complicated is 3b.
If you had to go back to the scans and see, what grade were you? What makes it go from Carotid to Vagal? Would it have to be grade 1 or less on the artery and wrapped/entangled around the vegas nerve? From my scans I am at about Grade 2, but both nerves #9 and #10 are covered by the growth (my kids and I are calling it Buk-Buk from the Super Rich Asians movie).
Super glad you are well.
Also, endocrinology surgeons have the best sense of humor. Guy at MD Anderson told me that side effects of the surgery are very minor. If they can close the carotid artery in time, one may loose their voice, ability to swallow and end up with a feeding tube, or not able to breathe and need a tracheal tube. Nothing serious.