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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 6, 2022
In reply to @cootiesgirl1 "Thank you for your interest, @hopeful33250! When I say no following doctor- JH doc is a..." + (show)
@cootiesgirl1

Thank you for your interest, @hopeful33250! When I say no following doctor- JH doc is a bladder ca doc, tumor was in bladder but NOT bladder cancer. My uro who was treating me for bladder ca is here. He knows nothing about any of this dx. JH doc said monitor yearly with PET/MRI and cystoscopy. Uro here carrying out orders. Other than that, I don't know who would respond to suspicion of a tumor. JH doc said I could return to their neuroendocrine team if needed. I am monitored at my local cancer center for hemochromatosis and they won't oversee it b/c they said it is too rare. Yes, I'm assuming the AP window defect is congenital. I have always had a murmur, but didn't know the cause. I can only assume this is it.

I was reading a post above and am a bit concerned b/c I have been having sweats, flushing, higher blood pressures and headaches, which I usually do not have. What could be done at the local level to begin? (Metanephrines, 24-hour urines?) I came off prednisone for cellulitis of face about 9 days ago. Seems to have started during that. I have also pretty much cut out sugar after having been a sugar addict. I am so confused as to what may be what. Thoughts?

Peace, Joy and Good Health to All,
Susan

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Hello @cootiesgirl1,

As it has been some time since your last post on Connect, I'm wondering how you are doing. Could you post an update when it is convenient?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 2022
In reply to @northwoodsbarb "Hi Teresa, Yes, my video appointment was fantastic and informative. I’m glad I decided to do..." + (show)
@northwoodsbarb

Hi Teresa,

Yes, my video appointment was fantastic and informative. I’m glad I decided to do it. Thank you for asking.

Next steps to come.

Barb

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Hello @northwoodsbarb

I noticed that it has been several months since you last posted. How are you doing? Have you had any treatments that you would like to discuss, or any questions?

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1 reply
tenclawz | @tenclawz | Oct 5, 2022

The tumor is located on the adrenal gland. The primary
doctor referred me to the cancer doctor, who did the biopsy.
As far as we know this is the only case here in Mobile.
It seems that none of the doctors here know anything
about a paraganglioma.

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patriciagsr | @patriciagsr | Oct 5, 2022
In reply to @sharik "I did not have much of a voice. It was very weak and raspy. I couldn’t..." + (show)
@sharik

I did not have much of a voice. It was very weak and raspy. I couldn’t talk on the phone. This is because my vagus nerve was severed and therefore my left vocal cord is paralyzed. A couple of months later I had an injection into the vocal cord to plump it up so that my cords could again come together and make sound. It isn’t perfect but it is so much better than it was. I also sometimes have trouble swallowing clear liquids as they go down so fast and can go down the wrong tube. I try to always use a straw and that helps a lot. All in all, much better than before surgery!

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Hello…just wanted to know how are you…please let me know.

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sharik | @sharik | Oct 5, 2022

Hi! I was diagnosed with a paraganglioma 6 years ago. Mine was located in my neck. The best advice I can give you to start is to find a doctor that knows about paras. When they are biopsied they can get “angry” so you need to find someone who is more familiar. If you are on Facebook, a great resource is a group called Pheochromocytoma and Paraganglioma Support Group.

I had a great outcome and full recovery. I credit my doctor with referring me to Mayo right away where I received the best care possible. Let me know if you have any questions. I wish you the best of luck!

Welcome to the Zebras!

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patriciagsr | @patriciagsr | Oct 5, 2022
In reply to @shanda "@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come..." + (show)
@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.

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Just go to Mayo and follow their indications. As many have said, they do their own test. I would suggest to get an appointment and follow what they say. They are experts and paragangliomas are kind of rare.

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patriciagsr | @patriciagsr | Oct 5, 2022

Hello, I had a vagal paraganglioma that was removed by Dr Pirgouisis in Mayo in Jacksonville and they told me a biopsy was not recommended and it would be done when it was removed. I suggest you 1st go to Mayo, if there is where you will be treated, and let them decide what to do…
Keep us posted

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 5, 2022
In reply to @tenclawz "I had a needle biopsy through the back, AND, it was done locally. Biopsy was sent..." + (show)
@tenclawz

I had a needle biopsy through the back, AND, it was done locally. Biopsy was sent to a lab in Texas to learn
what it was. My doctor had never heard of it before.
I would like to hear more about your symptoms if
you would , please.

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@tenclawz thanks for the additional information about your diagnostic process and the it was confirmed to be a paraganglioma tumor. I'm tagging a few other members who can share their symptoms and treatment experiences like @sharik @cootiesgirl1 @ristene @patriciagsr @mrruttinger1 @katherinepearl350 @northwoodsbarb.

Tenclawz, where is your tumor located? Did your doctor refer you to a cancer center or a physician specializing in paragangliomas?

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tenclawz | @tenclawz | Oct 5, 2022

I had a needle biopsy through the back, AND, it was done locally. Biopsy was sent to a lab in Texas to learn
what it was. My doctor had never heard of it before.
I would like to hear more about your symptoms if
you would , please.

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1 reply
tenclawz | @tenclawz | Oct 5, 2022
In reply to @colleenyoung "Welcome, @tenclawz. To connect you with other members who have experience with paragangliomas and to read..." + (show)
@colleenyoung

Welcome, @tenclawz. To connect you with other members who have experience with paragangliomas and to read the information provided in the previous posts, I moved your message to this existing discussion:
- Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/

Paragangliomas are rare. Your symptoms are fairly general and can be caused by many different conditions. May I ask what testing or clinical findings have led to suspecting that you have a paraganglioma tumor?

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A needle biopsy through my back into the tumor which was sent to a lab in texas .IT took over a week for the lab. to figure out what it was.My oncologist called me with the diagnosis Paraganglioma tumor.

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