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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: 11 hours ago | Replies (109)Comment receiving replies
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
Replies to "Hello, My name is Ristene and I was diagnosed with a glomus jugular paraganglioma on 1/10/19...."
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
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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?