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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: 3 days ago | Replies (127)Comment receiving replies
@sharik
I'd like to know how your experience w carotid body paraganglioma removal went as well! I am a patient at Mayo in Rochester, and will be returning in April for an eval to see if there are any changes to my small tumor on bifurcation of my right carotid artery. I am a patient of Dr Bancos, Dr Moore, and Dr Link. Initially, Dr Bancos ordered the 24-hr urine test, blood draw, PET scan, and genetics mtg. They had seen my CT w contrast & MRI w contrast I'd had done at home.
I'd like to know if you are tumor free, if you had any pre-surgical hormone "balancing" to do, if you have any followups still, if you are on meds, etc. There are so few of us, and the waiting is the hardest part b4 having the Thing dealt with! /s/ @gangcarotid1
P.S. THANK YOU, @colleenyoung for opening this thread! Have been terrified to not hear of anyone else w this except recently @msmith49
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I apologize for the delay in replying. Life got in the way, as it usually does.
I am not tumor free. I have one on my right vocal chord. This side was paralyzed when the removal of the vagal para affected loads of unforseen things. Docs still don't know quite how much the vagus is responsible for. hehe.
I had no pre surgical balancing. The surgeon had only removed CBT's. I had no pre surgery anything, no post op anything and only found out from the radiologist, by chance that I should have been monitored every 3 years via scans.
I am not on any meds, Thank God!
My little friend does not secrete so that is a blessing too, although I consider myself a phlegmatic, I found after my surgery that my anxiety and blood pressure shoot through the roof at silly little stressors.
I still have to find a team that know about all of this and had to start my research all over again when I moved states.
You are in the best place for your help.
My genetic test revealed that I am SDHD, c.242C>T (p.Pro81Leu). My genetic test was performed by Invitae (Invitae #: RQ4370261).
They gave me a letter to share with my family for their children to be tested. Although all 7 of my siblings have this, it is hit and miss, so far, with our nieces and nephews
I am a proponent of targeted radiation therapy and wish it had been offered for the first para.
God bless with your future. Praying for a great outcome.