Paraganglioma / Carotid Body Tumor Question
Hello. I was just diagnosed with paraganglioma and carotid body tumor. My doctor has referred me for a biopsy prior to referring me to Mayo Clinic. In my research, I have not found where Mayo's or any other site recommends a biopsy for this disease. I am also wondering if Mayo does recommend a biopsy, if they will want to do their own. So is having a biopsy done locally a) medically necessary and/or b) waste of time & money if Mayo will just do their own? I appreciate any knowledge or experience anyone may have on this issue. Thanks!
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Welcome, @puddknocker. I can imagine you have lots of questions. I moved your message to this existing discussion:
– Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/
I did this so you can meet other members like @northwoodsbarb @labgirl57 @hdanielle62000 @sharik @patriciagsr @tenclawz @cootiesgirl1 and more who have experience with paraganglioma.
Paraganglioma is a type of neuroendocrine tumor that forms near certain blood vessels and nerves outside of the adrenal glands. You may be interested in following the discussions in the Neuroendocrine Tumors (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
As you prepare for your meeting with the oncologist, I suggest keeping pen and paper (or notes on your phone) handy to jot down questions as they come to you. Here's a few that I would ask:
- What are my treatment options?
- What tests will I have to determine more about the paraganglioma and my treatment options?
- What are the expected benefits, risks and side effects of treatment?
What questions would you add?
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?