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Paraganglioma / Carotid Body Tumor Question

Neuroendocrine Tumors (NETs) | Last Active: 3 days ago | Replies (108)
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@puddknocker

I'm a new patient, with lots of questions.
I'm 74 years old, and was told last week that I have a malignant paraganglioma, aka carotid body tumor. I found it about two months ago while I was shaving, and it has grown rapidly. I have been to three doctors at three different hospitals, but finally have an appointment to see a hematologist/oncologist. I'm not worried, but I do have a lot of questions and concerns. I hope the treatments won't be too bad, or continue for very long.

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Replies to "I'm a new patient, with lots of questions. I'm 74 years old, and was told last..."
Colleen Young, Connect Director | @colleenyoung | May 2, 2023

Welcome, @puddknocker. I can imagine you have lots of questions. I moved your message to this existing discussion:
– Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/

I did this so you can meet other members like @northwoodsbarb @labgirl57 @hdanielle62000 @sharik @patriciagsr @tenclawz @cootiesgirl1 and more who have experience with paraganglioma.

Paraganglioma is a type of neuroendocrine tumor that forms near certain blood vessels and nerves outside of the adrenal glands. You may be interested in following the discussions in the Neuroendocrine Tumors (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

As you prepare for your meeting with the oncologist, I suggest keeping pen and paper (or notes on your phone) handy to jot down questions as they come to you. Here's a few that I would ask:
- What are my treatment options?
- What tests will I have to determine more about the paraganglioma and my treatment options?
- What are the expected benefits, risks and side effects of treatment?

What questions would you add?

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patriciagsr | @patriciagsr | May 2, 2023

Hello puddknoker, I am sorry for the news you received last week, I totally feel for you.
I had mine removed in Mayo Clinic Jacksonville in Dec 2018, had a very difficult 18 month recovery but after 3.5 years I am 85% recovered and leading a normal life.
How can I help you ? let us know your concerns and questions and we will try to give you our best input to help you.
Bye for now

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