Paraganglioma / Carotid Body Tumor Question

SO glad to find this method of sharing! Was diagnosed w CBT in 'V' of carotid, Cia CT w/ contrast 44 DAYS ago, and confirmed w MRI w/ contrast 20 DAYS ago. After a dzn calls/texts w/ PCP, & 3 w/ ENT, still no calls, plans, nothing, after ENT said he'd call day after MRI. This is terrifying to me, as my father had a CBT that surgeons were unable to completely remove. And his mom died of throat cancer. Am leaning toward the research found that says these are sometimes inherited. My PCP said they'd come up w a treatment plan well over a month ago. I'm not waiting. Have contacted Mayo, gotten a patient #, sent my CT & MRI scans. Vascular dept has referred me to endocrine dept. Am awaiting further direction from Mayo. . . very anxious, nervous & scared.
How long does it typically take for Endocrine to contact new patient?

@gangcarotid1, I can imagine you're anxious, nervous, scared and much more. You are in good hands at Mayo Clinic. What treatment plan has been recommended? How are you doing?

A whole lot of stress went away once I started dealing w the folks at Mayo. The CT & MRI I'd had, I had Records here send to Mayo. The scans were reviewed by vascular, endocrine and ENT triage teams. I'm scheduled for 2 days of labwork, consults, PET CT, genetic counselling, et al, the first week of August. Got a boxful of stuff yesterday from Mayo to do a 24 urine sample. So things are progressing. While I'm still fairly scared, as is my husband & son & daughter, at least it is going to turn out as well as it can.
It's been 2 mos since the CT my PCP ordered, & tomorrow w/b 1 mo since the ENT said he'd call when he saw the MRI the next morning. It is incredible to me, after a dozen calls to PCP's ofc, & 3 calls to ENTs ofc, no return calls!
I'm keeping extremely busy and trying not to worry. Thanks for asking, Colleen!

A whole lot of stress went away once I started dealing w the folks at Mayo. The CT & MRI I'd had, I had Records here send to Mayo. The scans were reviewed by vascular, endocrine and ENT triage teams. I'm scheduled for 2 days of labwork, consults, PET CT, genetic counselling, et al, the first week of August. Got a boxful of stuff yesterday from Mayo to do a 24 urine sample. So things are progressing. While I'm still fairly scared, as is my husband & son & daughter, at least it is going to turn out as well as it can.
It's been 2 mos since the CT my PCP ordered, & tomorrow w/b 1 mo since the ENT said he'd call when he saw the MRI the next morning. It is incredible to me, after a dozen calls to PCP's ofc, & 3 calls to ENTs ofc, no return calls!
I'm keeping extremely busy and trying not to worry. Thanks for asking, Colleen!

@shanda Do NOT let your doctor do a biopsy. Paragangliomas can get very “angry” and most doctors that have any experience with them know this. My vascular surgeon at Mayo is Dr. Bower and I would highly recommend him. Get your referral and let Mayo take it from there. Almost all testing that I had done previously was done again by the Mayo doctors or under their supervision. If you are on Facebook, search for a group called Pheochromocytoma and Paraganglioma Support Group. There is so much helpful information there! And if you want to contact me directly I would be happy to answer any questions you have. I wish you the best of luck! At Mayo you are in good hands!!

Thank you, Colleen,
It is nice to have a connection with people on the same road. This journey can be very lonely, frustrating, confusing, and frightening.
I was correctly diagnosed, after I informed my family GP in Zimbabwe of the possibility, that the swelling on my neck was not mumps or lymph nodes. He had not heard of Carotid body tumors. Not unusual, I have come to learn. The dentist I worked with liked to say that most GP's knew nothing about the body from the neck up. 😉
My father had huge swellings bi-laterally from untreated CBT's, misdiagnosed, and an attempt had been made, years earlier to unsuccessfully, to remove one!
I had to travel to South Africa to have mine which was then 5cm removed. I later learned that this surgeon pioneered the procedure, removing the branch of the Carotid artery it was clinging to.
I had another on the other side removed when I was living in South Africa.
There were no follow-up treatments, observations, or checkups.
When I was living in Atlanta I felt the beginnings of another in my neck and, the ENT referred me to her professor as she felt it was not a CBT.
It was a Paraganglion encapsulating my vagus. They decided to remove it along with part of my vagus, paralyzing my vocal cords and leaving me with many troublesome side effects.
They did inform me that I had another growing on the other side of my neck, but rather than surgery, they advised targeted radiation, or I would end up with many disadvantages.
The Radiologist they referred me to had treated 5 patients in his 25 years.
It was the way to go and I think, how I will proceed with the new one I have growing on my vocal cords, or not treat it. This tumor is so slow-growing. Unless it is life-threatening, I could bide my time.
It is traumatic though, and I do understand this is common with rare diseases, that it is so difficult to find anyone to advise and treat patients. We have to spend so much time and energy trying to find someone to treat us. I have become the initial source of information for my family living in South Africa, who all have this, as well as our cousins on my father's side. We share information, war stories, symptoms, and, "Do you have this, did this happen to you after surgery, tell your doctor this," conversations.
My geneticist gave me a letter to pass on to my family about screening their children for this gene mutation. The Pheo Para alliance has a lot of information, but they can also only do so much.
Sorry for the long rant.

@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

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.

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.