Paraganglioma / Carotid Body Tumor Question

@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

Thank you for the hug!

Thank you for the hug!

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!

@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?

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?

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.

Welcome, @gabulawayo. Do you have a carotid body paraganglioma? I look forward to learning more about your journey.

From my experience, these are never to be biopsied.

Blessings on your recovery Sharik !!! Huge thanks to this group and to Mayo Clinic for hosting this. Even for non-patients. Information is power.