Paraganglioma / Carotid Body Tumor Question

Great thoughts, @patriciagsr. Good tools for anyone dealing with life's difficulties. Thank you.

Your comments remind me of a song by Simon and Garfunkel. Part of it goes like this:
In a clearing stands a boxer, and a fighter by his trade,
And he carries a reminder of every glove that laid him down,
Or cut him until he cried out in his anger and his pain,
I am leaving, I am leaving. But the fighter still remains.

I have my first appointment with an oncologist tomorrow morning. The comments from members of this support group have been both alarming, and hopeful. I appreciate each one of you, and pray for you as I pray for myself.

I wish you all the best at your appointment, @puddknocker. I look forward to hearing from you after your appointment.

Carotid body paraganglioma. Diagnosed two weeks ago. Unilateral, left side, grade 2 internal carotid and grade 3 external.
Question about blood and urine catecholamines test. Did your paraganglioma secrete? I have heard that neck paragangliomas only secrete norepinephrine if they do at all. Not other hormones.
What are considered to be the high numbers? I am 790 pg/mL for Norepinephrine, 47 pg/mL for Epinephrine, and 38 pg/mL for Dopamine on the plasma test. Thanks in advance. V

My carotid body tumor was re-diagnosed as B cell follicular lymphoma, whatever that is. It may be an acronym They may call it something else tomorrow. I have tumors throughout my body, but three chemo treatments will probably put it into remission. I will be getting a permanent IV port on June 5, and begin chemo the next day. I have been to so many appointments, seen so many doctors, been to so many hospitals, had so many tests, I feel like I have been on a merry-go-round for too long. The paperwork is incredible, same information over and over again. Getting into a regular treatment schedule will be a relief.

My tumor did not secrete. I don’t remember what “normal” numbers are now, but my labs were never out of range. I did the 24 urine test twice - once with my primary and again with the Mayo lab, and both were fine. I also did an endocrine test before my surgery and that was good as well. My tumor was thought to be a CBT but ended up being vagal instead. Not sure if that makes a difference or not. Good luck!

If you are on Facebook, there is a group called Pheochromocytoma and Paraganglioma Support Group. There is a lot of great information there.

I'm glad to hear that there is a treatment plan in place for you, now @puddknocker. I'm sure that you are relieved to be at this point. It really can feel like a medical merry-go-round when you are first diagnosed.

It must be very encouraging to know that the three chemo treatments will probably put you in remission.
Do you know the frequency of the chemotherapy? Will it be monthly?

Hello @coachv and welcome to Mayo Connect. I'm glad that you found this forum. It is so helpful to be able to communicate with others who share a similar diagnosis.

If you are comfortable sharing more information, I'm wondering what type of symptoms led to this diagnosis? Has a treatment plan been put in place?

Hello Teresa and thank you for having me!
I have had symptoms, but, as many people, had no idea what Neuroendocrine tumors are.
About a year and half ago my blood pressure started to sky rocket. Highest we recorded was 247 over 185. I could feel my own hair grow. Started loosing body hair about the same time. Life long migraine sufferer, I got a new type of migraine/headache. Something new, different pain altogether. This one starts at the top of the head (crown) and feels like the neck or the muscles that move the head are locked up. Not an immense pain like ocular/nasal type migraines (sparkles in peripheral vision) or the terrible back of the head ones that shift in the spine and explode with any movement. I have had a history of concussions from playing hockey and being hit by drunk drivers.
My primary has retired and my new guy (counting my blessings) is a classic hands on diagnostician. Old school. I have noticed a small lump in my neck on the left side around Christmas holidays, thought it was just some scar tissue from being hit with a puck.
My new primary felt this thing and ordered an ultrasound. After the ultrasound, immediately he ordered a CT of the neck. After that in a matter of days he had me visit an ENT. All here in Houston, TX. ENT (two of them) inserted a camera up my nose and confirmed carotid body paraganglioma. Absolutely no biopsies.
Blood, urine, and 24hr urine cathecolamines tests produced different results. At one point I am through the roof, other test I am in 80 -90% normal.
Great friend of mine is a geneticist and said that from his understanding, carotid paragangliomas do not secrete much, if they do is norepinephrine. If you have elevated epinephrine, dopamine, and norepinephrine all together, one must have some extreme odd ball neck para, or most likely answer is that there is another one somewhere, most likely an adrenal gland resident. During the very initial exam, my red blood cell count was very high, urine even more than blood. I was referred to the urologist, during the exam he found a spot on the left kidney that when pressed literally made me scream. Again, this was before any of the Ultrasound, CT, ENT, etc.
Urologist has me scheduled for a scan next Friday, also a camera "through the front" to look at gold bladder and kidneys.
My endocrinologist has ordered a ganglioma specific PET scan, there is a nuclear formula that supposed to make this things light up like lasers. To see if there is a second one. He was the third person to tell me that secreting carotid pargangliomas are rare, ones that secrete anything other then norepinephrine, you get to name :-).
I have a PET scan tomorrow as well as geneticist and another blood/urine drive.
From the genes question, if anybody has mutations, have we heard of SDHAF2? Also, has anybody had both paraganglioma and pheochromocytoma develop? What typically comes first, chicken or an egg?
My surgical consult is Monday at MD Anderson. Just out of curiosity, if you have both, what is a typical process? Take one out first?
Sorry if its too much information.
Thank you for welcoming me to the forum.

Coach V

Thank you Sharik! Extremely dumb question. Have you heard of Shamblin grades? If tumor is wrapped 180 degrees or less around the artery it is grade 1, 180 - 270 degrees is grade 2, all around 360 is grade 3. More complicated is 3b.
If you had to go back to the scans and see, what grade were you? What makes it go from Carotid to Vagal? Would it have to be grade 1 or less on the artery and wrapped/entangled around the vegas nerve? From my scans I am at about Grade 2, but both nerves #9 and #10 are covered by the growth (my kids and I are calling it Buk-Buk from the Super Rich Asians movie).
Super glad you are well.
Also, endocrinology surgeons have the best sense of humor. Guy at MD Anderson told me that side effects of the surgery are very minor. If they can close the carotid artery in time, one may loose their voice, ability to swallow and end up with a feeding tube, or not able to breathe and need a tracheal tube. Nothing serious.