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@cootiesgirl1

@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!

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Replies to "@sharik thank you for reaching out. I am still in shock and trying to figure out..."

I have to admit that I don’t know much about mets or any of that. My endocrinologist at Mayo gave me the option to do genetic testing, which I did and the result was negative. Had it been positive I would have had my kids tested.

Wherever you get treatment at, it’s important to find a doctor with experience with these kind of tumors. They are rare. If they think it is a para it should NOT be biopsied as they can secrete and cause lots of problems.

I hope you find some answers. I will be thinking of you! If you are not a fan of Facebook, one of your family members could join the group and get info for you. I cannot stress enough the amount of knowledge there from the people that have lived with this. Also which doctors to see etc. Keep us posted on your treatment please!

Hi @cootiesgirl1, how are you doing? To answer your question, some paragangliomas may be hereditary. Here's some information that helps explain:
– What is the chance that this is genetic? http://endocrinediseases.org/adrenal/paraganglioma_genetic.shtml

The results of your CT showing either NED (no evidence of disease) or metastatic disease confuses me. Have you found out more since you last posted? What treatment are you getting, if any? Are you considering genetic testing?

Pheochromocytoma & Paraganglioma – The Pheo Para You may find this group helpful for information. I would also suggest looking up BCAN which is the Bladder Cancer Network. I was diagnosed with a rare Bladder Paraganglioma last year which was successfully removed at the Cleveland Clinic. In addition, underwent genetic testing with negative results.