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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: Aug 20 8:34pm | Replies (139)Comment receiving replies
I found your story very helpful.
I was just diagnosed with both a vagus nerve and bilateral carotid body tumors. Mayo Clinic was absolutely wonderful. I am not a surgical canidate because of the location and size of my vagus nerve tumor. I am currently preparing for Proton therapy and hoping for the best.
I am also going to have genetic testing done.
Replies to "I found your story very helpful. I was just diagnosed with both a vagus nerve and..."
Welcome @ljstates. Glad to hear you are consulting at Mayo Clinic. When will you start proton therapy? At Rochester or Phoenix?
We are "twins." I, too, was diagnosed with a (likely) vagus neck tumor and am slated for proton radiation in Rochester soon. Mayo has been great! It's interesting how all the surgeons I've seen in the past 8 months since discovery seem to know nothing about targeted radiation like proton. For virtually inoperable tumors, it seems to be the way to go.
How did your radiation go?
I'm having genetic testing as well.
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So, the tumors are on both left & right carotid arteries in your neck as well as down the base of your neck? SO praying for you!
I declined genetic testing, as it can screw up insurance coverages.
I return in April for another check of my carotid artery tumor. I've noticed a definite increased pressure, and increased pain in ear and neck. Will be surprised if it hasn't grown. Hoping it is only ON the bifurcation and has not penetrated the artery. My diastolic BP has become intermittently elevated, w systolic remaining normal.
Will be glad to get checked!
Please I'd very much like to be kept in the loop on your treatments, prognoses, and results.