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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: Jun 3, 2023 | Replies (107)Comment receiving replies
My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes to thighs. My para was removed December 2016 at Mayo and I am doing great!
Replies to "My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes..."
hello @sharik , any consequences after the surgery ?
Carotid body paraganglioma. Diagnosed two weeks ago. Unilateral, left side, grade 2 internal carotid and grade 3 external.
Question about blood and urine catecholamines test. Did your paraganglioma secrete? I have heard that neck paragangliomas only secrete norepinephrine if they do at all. Not other hormones.
What are considered to be the high numbers? I am 790 pg/mL for Norepinephrine, 47 pg/mL for Epinephrine, and 38 pg/mL for Dopamine on the plasma test. Thanks in advance. V
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@sharik thank you for reaching out. I am still in shock and trying to figure out what is next. I am not a fan of Facebook, so that group is out 🙁 Mine was in my bladder and was dx as high grade transitional cell urothelial carcinoma. When I developed a septic like reaction to the 9th BCG treatment and was told I couldn't have anymore, I decided to go to Johns Hopkins Brady Urological Institute for a second opinion. I had my slides sent from the original tumor. They diagnosed it as paraganglioma. I don't know if this is hereditary or not. I am adopted and have had many lovely hereditary health ailments surface in the past 10 years. I do have 2 grown children and they would need to know if it were hereditary, right? The next step that the doc from JH said is to have a PET scan. I just had a CT on 3/7/19 which showed NED or mets. I am scared. Is this "better" than bladder cancer? Wow... that sounds messed up... 🙂 Thanks for any help!