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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!

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Replies to "My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes..."

@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!

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