About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (7)

Fri, Feb 8 10:56am · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

So glad you have a plan! Wishing you safe travels and I will be thinking of you!!

Mon, Feb 4 1:27pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I was lucky in the fact that my primary doctor realized something was wrong, did scans and determined it was a para, referred me to a vascular surgeon, who referred me on to Mayo, all within a few days. But the surgeon did order a 24 hour urine test, which the endo at Mayo had me redo. So my gut says to just have them do the referral and then let the Mayo doctor(s) have you do the tests they want. I also didn’t have any blood pressure spikes or anything so going on meds wasn’t really an issue. If you are having trouble with that then I would keep the endo appointment. If possible I am going to try to send you a private message with my phone number if you want to talk/text. I remember how overwhelming it was when I was first diagnosed and everything I read on the internet either confused me or terrified me. But I had a great outcome and am doing well! Para eviction December 2016 😃

Mon, Feb 4 10:12am · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I would also like to hear updates. These tumors are so rare. We fellow “zebras” need to stick together!

Sat, Feb 2 5:04pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

@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!!

Jan 19, 2018 · Pheochromocytoma & Paraganglioma in Neuroendocrine Tumors (NETs)

No, I am one of the lucky ones that has no signs of mestasis. Mine was removed and they don’t expect any more issues. I know others that have had lots more issues than me, but have still had good routcomes. Are you on Facebook? There is a great group for Paraganglioma and Pheochromocytoma. Lots of good info and support there.

Jan 19, 2018 · Pheochromocytoma & Paraganglioma in Neuroendocrine Tumors (NETs)

I hope that you can find some answers at Mayo! I had a great care team there that removed my para December 2016.