Paraganglioma / Carotid Body Tumor Question

@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?

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.

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.

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?

Paraganglioma Tumor
I have six out of ten symptom that is known best all though there are a hundred or more the medical info says .Right now it's nausea and diarrhea,Bad headaches and just no energy. I would like to hear from someone that maybe showing these symptom, I can't find a l about this tumor because it's so rare.

@northwoodsbarb

So good to hear your report, Barb! Will you be continuing to explore the next steps with Mayo or will your current medical team follow Mayo's suggestions?

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

Good evening, it is hoped you had an informative appointment resulting in a detailed treatment plan to move forward, should you choose to do so. I never ignore the feelings when it just doesn't feel right! We all have the ability to think it through if we take the time. As a child growing up when anxious or uncertain, my grandmother would say, "sometimes you need to sit, be still and let you mind calm down--and you will know what to do and when to move" .... she was right. It is hoped the words from my grandmother will help you along your journey. Be safe and take care 🙂

Hello @northwoodsbarb,

I'm glad to hear that you were able to have a video appointment with a doctor at Mayo.

I look forward to hearing from you again. Were you able to get some helpful information at that appointment?

Wow, this one conversation eased my mind and gave me so much info. I have a unilateral CBT para that was found in January. I was going to get surgery on June 28 but never saw an endo and just had a hinky feeling.

After getting all records sent to May I have a video call with Dr Gruber this coming Wednesday.

Thank you!