Paraganglioma / Carotid Body Tumor Question

I have to admit that I don’t know much about mets or any of that. My endocrinologist at Mayo gave me the option to do genetic testing, which I did and the result was negative. Had it been positive I would have had my kids tested.

Wherever you get treatment at, it’s important to find a doctor with experience with these kind of tumors. They are rare. If they think it is a para it should NOT be biopsied as they can secrete and cause lots of problems.

I hope you find some answers. I will be thinking of you! If you are not a fan of Facebook, one of your family members could join the group and get info for you. I cannot stress enough the amount of knowledge there from the people that have lived with this. Also which doctors to see etc. Keep us posted on your treatment please!

Hi @cootiesgirl1, how are you doing? To answer your question, some paragangliomas may be hereditary. Here's some information that helps explain:
- What is the chance that this is genetic? http://endocrinediseases.org/adrenal/paraganglioma_genetic.shtml

The results of your CT showing either NED (no evidence of disease) or metastatic disease confuses me. Have you found out more since you last posted? What treatment are you getting, if any? Are you considering genetic testing?

I
CC...I have carotid paraganglioma and have looked at Columbia Prespatrian hospital neurological surgical team as it is close to where I live...any feed back?

I had great care at Mayo but have no idea about anywhere else. If you are on Facebook, there is a very helpful page called Pheochromocytoms and Paraganglioma Support Group. If others have been treated there they can give you some insight on care received. These are rare tumors and it is difficult to find an experienced doctor. That is much more important than traveling distance! That is how I found out these tumors should NEVER be biopsied before removal. Good thing my surgeon already knew that! Wishing you the best of luck on this journey.

Hello @ristene and welcome to Mayo Connect,

I am sorry to hear of this rare diagnosis. As you know, a rare disorder can be more difficult to diagnose and to treat. I hope that someone else will respond to your questions, I know how important it is to learn from the experience of others. We have many people in the NETs discussion group who have used Octreotide and some who have had PRRT treatments but not for this particular disorder.

I have also had a rare type of cancer, neuroendocrine tumors of the upper digestive tract. Right before my third surgery I found Mayo Connect and was glad to have others to share with me.

Since this is a rare disorder, would you care to share with us about your original (as well as current) symptoms and how it was diagnosed? From an article, I found on the NIH website it appears that a CT scan or MRI or the usual means of discovery. Here is a link to that article, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328838/, however, I have not picked up on what type of symptoms are usually associated with this disorder other than excessive sweating, tachycardia and hypertension. Have you had other symptoms as well as these?

Hello, My name is Ristene and I was diagnosed with a glomus jugular paraganglioma on 1/10/19. Genetic testing showed a mutation, SDHB positive. No one where I live knows anything much about these tumors and ever since I’ve been running around in circles trying to make plans for treatment. I was evaluated by Dr Karel Pacak at the NIH who originally thought that PRRT was the best treatment option. I don’t qualify to have this done at NIH because of the lack of confirmed pathology. No one is able to biopsy my tumor given the location and surgery is not an option. Therefore, he has suggested that I start Octreotide and have proton beam radiation.
I really would like some insight from patients who have gone through similar circumstances.
1.) when were you diagnosed ?
2.) what have been your treatment(s) ?
3.) where were you evaluated ?
4.) who was your physician ?
5.) what side effects did you experience ?
6.) what was your overall outcome?

Thank you in advance,
Ristene

Hi @ristene, I would like to add my welcome. You'll notice that I moved your message to this existing discussion about paraganglioma. I did this so that you can connect with other members like @shanda @cootiesgirl1 @claudiac and @sharik.

If you click VIEW & REPLY, you will be taken to the discussion and can read through past posts to find some of the answers to your questions about
1.) when were you diagnosed ?
2.) what have been your treatment(s) ?
3.) where were you evaluated ?
4.) who was your physician ?
5.) what side effects did you experience ?
6.) what was your overall outcome?

From what I understand from the posts of members, it is a good thing that your tumor was not biopsied. Have you considered traveling to a center that has paraganglioma specialists?

Welcome Ristene! I am sure you are feeling very overwhelmed right now, which is understandable. These are rare tumors and it is hard to find doctors that are familiar with them. My diagnosis was a carotid body tumor (CBT) but during surgery was found to be a vagus tumor instead. To answer your questions:
1. I was diagnosed in October 2016 by my primary care doctor. She could feel the lump in my neck and immediately ordered a CT scan and ultrasound.
2. I was referred to a vascular surgeon who sent me on to Mayo. I had surgery in December 2016 with a vascular and ENT surgeon. I also had a consult with an endocrinologist.
3. Mayo is the place to go!
4. My endocrinologist was Dr. Young, vascular was Dr. Bower and ENT Dr. Kasperbauer. I cannot say enough good things about them!
5. My tumor was entangled with my vagus nerve which controls swallowing and speech. I did lose my voice for the most part as my vocal cord on that side is paralyzed. A couple of months after surgery I went back to Mayo for an injection. My voice is not quite as strong as it once was but I am the only one that notices. I also had a little trouble swallowing in the beginning but that is much better now.
6. My outcome was great! Even with the side effects, it is much better than the extreme fatigue and nausea I had prior to removal.

If you have any questions please ask! I wish you the best of luck!!
Shari

@hopeful33250 Thank you for your kind response. It does help to know that at the times you feel most alone there are other people out there struggling with similar diagnoses. I am a nurse in a busy diabetes and metabolism clinic. Late December 2018, I was on the phone with a patient and tilted my head to the right. Only seconds later my tongue rolled to the back of my mouth, I nearly lost my voice and had slurred speech. I immediately placed my patient on hold and tried to tell my co worker what had just happened. I thought I was having a stroke. I had facial numbness and tingling from the corner of my mouth on the right side to my right temple. My physician works in the same clinic so I discussed this with her. Ultimately, we decided to hold off on imaging given the end of the year and treated for Bell's Palsy with high dose antivirals and steroids. My symptoms got slightly better but not much. It was the beginning of a new year and I thought, I'll have the MRI and nearly meet the deductible. I didn't think much of it as I'm already drowning in medical bills from my suspected diagnosis of seronegative Rheumatoid Arthritis four years prior. On January 9th I had a head and neck MRI and sure enough it showed a paraganglioma. I had never heard of this nor had my physician. She called around town to the oncologists, ENT, radiologists etc and ultimately told me she didn't know what it was but would get me where I needed to be. Prior to the diagnosis I had multiple symptoms that I chalked up to other diagnoses. For example: palpitations, chest pain, shortness of breath, headaches, ringing in the ears,flushing, hot flashes, excessive sweating, intermittent diarrhea. After diagnosis, the symptoms became stronger and started occurring more frequently than they had before. Interestingly enough, my heart rate hasn't been elevated much only during times of stress (normal) and my blood pressure hasn't been high (minus during a cold, also normal).

I’m not sure if you looked through prior posts, but if you’re on Facebook I strongly encourage you to join the group Pheochromocytoma and Paraganglioma Support Group. There is so much great information out there. FYI a pheo is a paraganglioma inside the nerve sheath. I was fortunate that my primary doctor knew what a para was and referred me to a surgeon who had actually removed a few. So they knew what I was dealing with. And they knew enough to refer me on to Mayo where they had dealt with many more. I too had symptoms that I thought were possibly mono or depression, and at one point was in the ER because I thought I was having a heart attack. I am so glad my para is gone! I hope you get some relief soon.