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Posts (10)

Mon, Apr 1 6:42am · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I have to admit that I don’t know much about mets or any of that. My endocrinologist at Mayo gave me the option to do genetic testing, which I did and the result was negative. Had it been positive I would have had my kids tested.

Wherever you get treatment at, it’s important to find a doctor with experience with these kind of tumors. They are rare. If they think it is a para it should NOT be biopsied as they can secrete and cause lots of problems.

I hope you find some answers. I will be thinking of you! If you are not a fan of Facebook, one of your family members could join the group and get info for you. I cannot stress enough the amount of knowledge there from the people that have lived with this. Also which doctors to see etc. Keep us posted on your treatment please!

Sun, Mar 31 8:59pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes to thighs. There is a Facebook group called Pheochromocytoma and Paraganglioma Support Group that is so very helpful! Please message me if you have any questions. My para was removed December 2016 at Mayo and I am doing great!

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!!