Paraganglioma / Carotid Body Tumor Question

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

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.

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?

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 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!

@sharik thank you for reaching out. I am still in shock and trying to figure out what is next. I am not a fan of Facebook, so that group is out 🙁 Mine was in my bladder and was dx as high grade transitional cell urothelial carcinoma. When I developed a septic like reaction to the 9th BCG treatment and was told I couldn't have anymore, I decided to go to Johns Hopkins Brady Urological Institute for a second opinion. I had my slides sent from the original tumor. They diagnosed it as paraganglioma. I don't know if this is hereditary or not. I am adopted and have had many lovely hereditary health ailments surface in the past 10 years. I do have 2 grown children and they would need to know if it were hereditary, right? The next step that the doc from JH said is to have a PET scan. I just had a CT on 3/7/19 which showed NED or mets. I am scared. Is this "better" than bladder cancer? Wow... that sounds messed up... 🙂 Thanks for any help!

My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes to thighs. My para was removed December 2016 at Mayo and I am doing great!

Hi @cootiesgirl1 and welcome to Connect.
I would like to introduce you to fellow Connect members @shanda and @sharik as they have experience with parangangliomas and may be able to offer you support.

Back to you @cootiesgirl1 since you have been diagnosed, what have your doctor's told you are your next steps?

Hello everyone. I was incorrectly dx with bladder cancer and after second opinion am one year later learning that is not what I had, but a paraganglioma. Anyone else have this?