1. < Neuroendocrine Tumors (NETs)

Paraganglioma / Carotid Body Tumor Question

Posted by shanda @shanda, Feb 2, 2019

Hello. I was just diagnosed with paraganglioma and carotid body tumor. My doctor has referred me for a biopsy prior to referring me to Mayo Clinic. In my research, I have not found where Mayo's or any other site recommends a biopsy for this disease. I am also wondering if Mayo does recommend a biopsy, if they will want to do their own. So is having a biopsy done locally a) medically necessary and/or b) waste of time & money if Mayo will just do their own? I appreciate any knowledge or experience anyone may have on this issue. Thanks!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

sharik | @sharik | Feb 4, 2019
In reply to @hopeful33250 "@shanda I'm glad to hear of the decision you have made. I look forward to hearing..." + (show)
@hopeful33250

@shanda

I'm glad to hear of the decision you have made. I look forward to hearing about your referral to Mayo.

Will you keep in touch?

Jump to this post

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

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 4, 2019
In reply to @shanda "Thank you everyone. As I researched more and spoke to different people this weekend I had..." + (show)
@shanda

Thank you everyone. As I researched more and spoke to different people this weekend I had decided that a biopsy here locally was just not a wise decision. The doctor I saw admitted to not knowing much about paraganglioma, thus Tue plan to refer me to Mayo Clinic. I think he requested the biopsy as that is probably a normal course of action for other types of tumors he treats.I will certainly be contacting his office on Monday with the information you all have shared and request he proceed with the referral.

Jump to this post

@shanda

I'm glad to hear of the decision you have made. I look forward to hearing about your referral to Mayo.

Will you keep in touch?

REPLY
1 reply
shanda | @shanda | Feb 3, 2019

Thank you everyone. As I researched more and spoke to different people this weekend I had decided that a biopsy here locally was just not a wise decision. The doctor I saw admitted to not knowing much about paraganglioma, thus Tue plan to refer me to Mayo Clinic. I think he requested the biopsy as that is probably a normal course of action for other types of tumors he treats.I will certainly be contacting his office on Monday with the information you all have shared and request he proceed with the referral.

REPLY
1 reply
sharik | @sharik | Feb 2, 2019
In reply to @sharik "@shanda Do NOT let your doctor do a biopsy. Paragangliomas can get very “angry” and most..." + (show)
@sharik

@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!!

Jump to this post

@colleenyoung thank you for tagging me!

REPLY
sharik | @sharik | Feb 2, 2019
In reply to @colleenyoung "Hi @shanda, I'm not a medical professional. However, I did a quick internet search for carotid..." + (show)
@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

@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!!

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 2, 2019

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?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.