← Return to Paraganglioma / Carotid Body Tumor Question

Discussion
Comment receiving replies
@colleenyoung

Hi @shanda,
I'm not a medical professional. However, I did a quick internet search for carotid body tumor and biopsy and found this statement
"The diagnosis of carotid body tumor, also known as a chemodectoma or paraganglioma, is typically made with radiological studies. Fine needle aspiration biopsy (FNAB) is seldom requested for this purpose due to rare but dreadful reported complications such as hemorrhage and damage to the carotid artery."
https://www.ncbi.nlm.nih.gov/pubmed/18232000
You may want to get a second opinion before having a biopsy.

According to Mayo Clinic's information here about paraganglioma: https://www.mayoclinic.org/diseases-conditions/paraganglioma/cdc-20352970 Diagnosis testing may include:
- 24-hour urine test.
- Blood test.
- Imaging tests. These studies may include an MRI, CT and specialized nuclear medicine imaging such as a PET scan.
- Genetic testing.

The website also states
"Note that examining tumor tissue under a microscope cannot with certainty determine whether a tumor is cancerous.
People with paragangliomas need care by an experienced, multidisciplinary team. Ask your doctor if he or she regularly treats people with this condition, as most doctors rarely (if ever) encounter paragangliomas and are unfamiliar with the best approaches to diagnosing and treating this rare tumor. Under such conditions, it's important to seek a second opinion from a team that specializes in the care of people with rare neuroendocrine tumors such as paragangliomas."

You can contact Mayo Clinic to get answers to your questions, guide you through possible treatment plans and discuss costs. Here is the contact info http://mayocl.in/1mtmR63 I'd like to bring fellow member @sharik, who had a paraganglioma removed at Mayo Clinic.

Shanda, is your doctor wishing you to have a biopsy to confirm the diagnosis or as part of the treatment plan?

Jump to this post


Replies to "Hi @shanda, I'm not a medical professional. However, I did a quick internet search for carotid..."

@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!!