Paraganglioma / Carotid Body Tumor Question

I'm a new patient, with lots of questions.
I'm 74 years old, and was told last week that I have a malignant paraganglioma, aka carotid body tumor. I found it about two months ago while I was shaving, and it has grown rapidly. I have been to three doctors at three different hospitals, but finally have an appointment to see a hematologist/oncologist. I'm not worried, but I do have a lot of questions and concerns. I hope the treatments won't be too bad, or continue for very long.

What will a CT angion show that a mri with gadolinium didn't show?

I had mibg scan show mild asymmetrical uptake right of neck and faint uptake salivary gland area July 2021. Had 24 hr urine normets come bck 4 xs normal level. Plasma normets only slightly elevated but retested 4 xs and all showed slight elevation. Ulltrasound April 2022 showed multiple well circumscribed hypoechoic 3.1 cm and 3.9 cm bilateral nodes. Follow up mri w/gadolinium 45 days later showed well circumscribed bilateral 3.1 cm and 3.9 cm craniocadial length in jugulastiric region, level 11A. Also noted well circumscribed homogeneous, low T1 and high T2 signal bilateral nodes posterior 6 mm and anterior 8 mm left partiod gland. Ordering a CT with angion, what will this show that others didn't show? Doctor afraid if orders PET 68 gallium it won't light up if not a somastin tumor. Feels the CT with angion will show if is in fact carotid body tumors or paragangliomas. IM VERY SYMPTOMATIC, PROFUSE SWEATING IF I GET UP START MOVING AROUND, ELEVATED PULSE RATE, HIGH BLOOD PRESSURE, WEIGHT GAIN AND INABILITY TO STAY ASLEEP THROUGHOUT NIGHT.

I was diagnosed at Mayo. They would not biopsy. They are the best. I have practiced in healthcare for 35 years and my husband is a physician. We would not consider going elsewhere. They go the extra mile to accommodate you.

Anyone who has a Retrostyloid vagal nerve paraganglioma? I was diagnosed at Mayo. Would love to hear about your experiences and how you are handling the symptoms. I was not a candidate for surgery due to the location and carotid artery involvement.

Yes, it is very weird to only have half of my face covered in sweat! But it was the best of all possible outcomes.

@northwoodsbarb
Oh, I'm so pleased that your surgery (and recovery) went so well! I am not familiar with Horner Syndrome, so I looked for information on Mayo's website for anyone interested:

--Horner Syndrome
https://www.mayoclinic.org/diseases-conditions/horner-syndrome/symptoms-causes/syc-20373547
Keep talking and post again as it is convenient!

Hi,

Sorry about having been remiss about writing here. I just started back working at pk-8 school a couple of weeks after my surgery and it’s busy!

As I referenced, I did have the surgery at Mayo to remove the paraganglioma from my neck. This was mid-August. I went into surgery thinking that I would have to have my vagus nerve severed, and I would have to learn to talk and swallow. In the recovery room, I asked for ice and then said, “I can talk!” I chewed the ice and said, “ and I can swallow!” I haven’t stopped talking since.

The tumor was not on the vagus nerve, but near it. I have some nerve issues (look up Horner syndrome), but it seems like no one notices.

Thank you for asking. Mayo is the best.

Hello @cootiesgirl1

I am sorry to hear that you feel "lost" in your treatment. It is certainly difficult to have a rare diagnosis and it is hard to get the right kind of help.

Have you considered contacting NORD (National Organization for Rare Disorders). NORD advocates for folks with rare disorders and very well might offer help in finding doctors who can help with the diagnosis of paraganglioma/pheochromocytoma.

Here is the website,

--NORD
https://rarediseases.org/
Take a look at the NORD website and perhaps you can find some help. It's certainly normal to feel like a "nervous Nellie" when you are dealing with complex health issues and if they are rare, it can be even more anxiety producing.

That being said, searching for help with organizations like NORD is empowering. Will you take a look at the website?

Hello,
Thanks for reaching out. Truthfully? I am lost. I think I am okay, other than that after a final annual follow-up cystoscopy and CT in December I will no longer be monitored. I have had a couple of scans since posting for this and other reasons (also have hemochromatosis), such as an adrenal "adenoma" and liver "hemangioma," which has been followed since 2013. I am concerned that "lymph nodes" (mediastinal, aortopulmonary window, etc.) have been seen on these scans, including the PET I had a couple years ago. They are called things like "nonspecific," etc. I was told by JH bladder doc that my tumor was benign and shouldn't come back. The "plan" was for annual CTs/cystoscopies through end of this year... then, NOTHING.

I need to know how to have this monitored here at home (Gloucester, VA), as I do not have anyone to assist me or to go to these "far-away places" that it seems we all must go. I do have face flushing, occasional palpitations, often look pale and deal with extreme blood sugar drops (to 55 within minutes of "feeling" it come on). I eat sugar and it goes away within 15-20 minutes. There is no rhyme or reason to those, with regard to eating (except when I eat something like a donut in the morning and then end up tanking). I am known as "nervous Nellie" because of my anxiety and have been convinced that it's a psych issue. I have a basic distrust of all things medical, resulting from my misdiagnosis/treatments that ensued unnecessarily. Even my hemochromatosis oncologist has no clue what paraganglioma/pheochromocytoma are. It is more perplexing, although much appreciated, that I have the worst gene combo for the hemochromatosis (two C282Ys) and haven't had to have phlebotomy since the induction phase in 2013. I eat what I want and take a calcium tablet with high-iron/all full meals, as it prevents the absorption of iron- grateful beyond measure, but concerned. All of this is very upsetting and too big to deal with on my own, so I just go on. I have chosen to be alone, so I am not seeking pity at all; it is what it is.

Does anyone know what protocol should be followed and for how long or how I could be monitored from here?

Again, thanks for reaching out. I think I "disappeared" because it was much easier to just block it out. I hope and pray for the health, happiness and well-being of all,

Susan