Paraganglioma / Carotid Body Tumor Question

Posted by shanda @shanda, Sat, Feb 2 9:50am

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!

Liked by sharik

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
@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
@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

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
@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?

Liked by sharik

REPLY
@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

@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come too). I have an appointment set with an endocrinologist here locally. Originally this was set up to start me on preop meds, when they thought it was a pheo and a local doc was possibly going to do surgery (I had lots of questions b4 I would have let that happen.) Anyway, since it is a para instead and they are going to refer me to Mayo, should I follow through with this endo appointment? My blood pressure has only been slightly elevated, not enough I feel to require meds. However, if the meds can help control potentially dangerous spikes due to episodes, I think maybe I should follow through with the appointment. Then I wonder if the doc will know enough about para to prescribe the correct meds. So I go back to thinking I should just wait for any more appointments until I can get to Mayo. Lots of info there and I realize the right answer may be hard to determine but I would appreciate any experience, thoughts, etc.. on this.

Liked by sharik, patriciagsr

REPLY
@shanda

@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come too). I have an appointment set with an endocrinologist here locally. Originally this was set up to start me on preop meds, when they thought it was a pheo and a local doc was possibly going to do surgery (I had lots of questions b4 I would have let that happen.) Anyway, since it is a para instead and they are going to refer me to Mayo, should I follow through with this endo appointment? My blood pressure has only been slightly elevated, not enough I feel to require meds. However, if the meds can help control potentially dangerous spikes due to episodes, I think maybe I should follow through with the appointment. Then I wonder if the doc will know enough about para to prescribe the correct meds. So I go back to thinking I should just wait for any more appointments until I can get to Mayo. Lots of info there and I realize the right answer may be hard to determine but I would appreciate any experience, thoughts, etc.. on this.

Jump to this post

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 😃

REPLY

Just got the call. I head to Mayo Clinic on Wednesday the 13th!

REPLY

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

Liked by shanda

REPLY
@shanda

Just got the call. I head to Mayo Clinic on Wednesday the 13th!

Jump to this post

@shanda, have you seen the Visiting Mayo Clinic group? There might be some questions you're asking that the community has already answered.
> Groups > Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Mayo also offers Concierge Services. It is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours.
Ways to Contact Mayo Concierge Services
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

During your time at Mayo, I'm sure you'll visit the Cancer Education Center. It is an oasis right in the main Gonda building. The library offers great information and so much more. Find out more on the Cancer Education Center page here on Connect: https://connect.mayoclinic.org/page/cancer-education-center

As you get ready to head to Mayo, don't hesitate to ask questions. There are plenty of members who can help you prepare for your first visit.

Liked by sharik

REPLY
@colleenyoung

@shanda, have you seen the Visiting Mayo Clinic group? There might be some questions you're asking that the community has already answered.
> Groups > Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Mayo also offers Concierge Services. It is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours.
Ways to Contact Mayo Concierge Services
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

During your time at Mayo, I'm sure you'll visit the Cancer Education Center. It is an oasis right in the main Gonda building. The library offers great information and so much more. Find out more on the Cancer Education Center page here on Connect: https://connect.mayoclinic.org/page/cancer-education-center

As you get ready to head to Mayo, don't hesitate to ask questions. There are plenty of members who can help you prepare for your first visit.

Jump to this post

Thank you!

REPLY

Surgery on extra adrenal para is scheduled for March 5th. Surgery for carotid body tumor will be 6-8 weeks after that.

REPLY
@shanda

Surgery on extra adrenal para is scheduled for March 5th. Surgery for carotid body tumor will be 6-8 weeks after that.

Jump to this post

Thanks for providing an update on your surgeries, @shanda. Wishing you well.
Will you send an update (as you feel like it) after the surgery on the 5th?

REPLY
@hopeful33250

Thanks for providing an update on your surgeries, @shanda. Wishing you well.
Will you send an update (as you feel like it) after the surgery on the 5th?

Jump to this post

Sorry. Haven't been on here in awhile. So many people to update after surgery that I forgot this site. I am doing well and hoping to go back to work this Friday. Surgery took extra long as did recovery (due to my bowels not wanting to wake up). My care at Mayo Clinic was amazing. The staff is wonderful.

REPLY
Please login or register to post a reply.