Paraganglioma / Carotid Body Tumor Question

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?

@gangcarotid1, I can imagine you're anxious, nervous, scared and much more. You are in good hands at Mayo Clinic. What treatment plan has been recommended? How are you doing?

A whole lot of stress went away once I started dealing w the folks at Mayo. The CT & MRI I'd had, I had Records here send to Mayo. The scans were reviewed by vascular, endocrine and ENT triage teams. I'm scheduled for 2 days of labwork, consults, PET CT, genetic counselling, et al, the first week of August. Got a boxful of stuff yesterday from Mayo to do a 24 urine sample. So things are progressing. While I'm still fairly scared, as is my husband & son & daughter, at least it is going to turn out as well as it can.
It's been 2 mos since the CT my PCP ordered, & tomorrow w/b 1 mo since the ENT said he'd call when he saw the MRI the next morning. It is incredible to me, after a dozen calls to PCP's ofc, & 3 calls to ENTs ofc, no return calls!
I'm keeping extremely busy and trying not to worry. Thanks for asking, Colleen!

A whole lot of stress went away once I started dealing w the folks at Mayo. The CT & MRI I'd had, I had Records here send to Mayo. The scans were reviewed by vascular, endocrine and ENT triage teams. I'm scheduled for 2 days of labwork, consults, PET CT, genetic counselling, et al, the first week of August. Got a boxful of stuff yesterday from Mayo to do a 24 urine sample. So things are progressing. While I'm still fairly scared, as is my husband & son & daughter, at least it is going to turn out as well as it can.
It's been 2 mos since the CT my PCP ordered, & tomorrow w/b 1 mo since the ENT said he'd call when he saw the MRI the next morning. It is incredible to me, after a dozen calls to PCP's ofc, & 3 calls to ENTs ofc, no return calls!
I'm keeping extremely busy and trying not to worry. Thanks for asking, Colleen!

@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!!