Carotid body tumor encasing completely carotid artery

Posted by elgie17 @elgie17, 1 day ago

Hi all. I have a CBT diagnosed in 2021. I have been on watch and monitor but last scan showed a growth so surgeon recommended intervention. I am very scared for surgery due to fear of stroke. Any surgery success story? Anyone tried any alternative therapy like Lutathera? My tumor is 5 cm, secreting dopamine. I am also positive for SDHA

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jlsgt | @jlsgt | 4 hours ago

Well, your concerns are absolutely valid. Seems like a very challenging surgery. Have you gotten a second opinion? Do you have symptoms at this time? Several surgeons thought my mesentery mass was inoperable, but finally found a group that could help me.

elgie17 | @elgie17 | 3 hours ago

Hi. I have no symptoms at all and no pain. But the mass is growing and has almost cometely encased my carotid artery. I have spoken to 2 surgeons thus far, NYU and MSKCC. They are not saying inoperable but very risky due to the artery involvement. Did you have your surgery done? Any issues after?