Paraganglioma / Carotid Body Tumor Question

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

Thank you !!!

Hello @75hostagarden and welcome to Mayo Connect and responding to @coachv. I appreciate you sharing the video link. While I have not watched it yet, I know that Dr. Liu is a renowned expert in NETs, as are the doctors at Mayo Clinic. I especially like your comment, "Do your research. Don’t just accept what is being told you. NET’s is not easy." This is so true with NETs. I am glad that you sought treatment at Mayo Clinic, they have excellent NET specialists.

Please share, as you are comfortable doing so, a bit about your history with NETs. Were there symptoms that led to the diagnosis or were the NETs found incidentally?

If your PET is not a DOTATATE 68 you might not get a correct answer to you tumor locations and size. I know MD Anderson is a good medical system. I highly recommend looking for Clinics that focus on NETS. Because I use Mayo Rochester I can’t say enough about how they have helped me but there are others groups that do amazing work. Do your research. Don’t just accept what is being told you. NET’s is not easy. The good thing is we have hope because it’s so slow growing. I’m adding a link. https://youtu.be/Y_wrbckiBkI Watch this YouTube and you will get a great understanding of why this disease is so hard to diagnose and why I started this with the DOTATATE 68 PET scan. If your insurance does not cover this scan ask for help from the NET’s foundation. They won’t pay your bill but there are people who deal with just the insurance/ non insurance aspect of this disease. Good Luck Coach V. We all understand that vague feeling of NET’s. Runner V

I don’t recall any kind of a grading system. The carotid artery is Y shaped and my scans showed that my tumor was sitting in the “V” of the Y. However, during surgery it was discovered that my carotid artery and vagus nerves were switched. The tumor had compressed the nerve so that it was splayed and had the Y shape on the scans. They had to leave me on the table and go talk to my husband. We had talked about the risks of the CBT but nothing about the vagus nerve such as possibly needing a feeding tube, losing my voice… As far as docs having a sense of humor: My husband was a mess and he asked the surgeons what they would do if it was their wife. My ENT said that he was recently divorced so probably not the one to ask ha ha! I am glad he chose removal. I would have been pretty mad if I had woke up and it was still in my neck. I have had a few challenges but pretty minor in the big scheme of things.

The treatments will be at 2 week intervals, a total of 3 treatments. There will be two PET scans along the way, to see how effective the treatment is. I'm guessing that there will maintenance treatments as time goes by. I'm basing that on the oncologist's request for a permanent, under the skin, IV portal. I will be getting that installed on June 5, then begin chemo the next day.

I'm not real clear on the grading system, but was told that my grade is 3a. That was based on the first tumor, which was found on my neck in March. It was diagnosed as a carotid body lymphoma. Then I had a PET scan which showed tumors throughout my body. The diagnosis was changed to B-cell follicular lymphoma. My blood pressure has been going up, too. I have had a slight loss of hearing in one ear, which could be caused by pressure on the nerve. Otherwise I feel fine. The oncologist said I do not need surgery, and that 3 chemo sessions should put the lymphoma into remission. I wish you well, and pray for your complete recovery. We are in God's hands.

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.

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

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?