Paraganglioma / Carotid Body Tumor Question

Wow. I am 34 and have also been through a lot in the medical world, I can only hope to make it to 74. I used to think I’d never want to be that age but now I want nothing more than to feel better and continue raising my amazing daughter. I hope everything goes well for you with your visit.

Thank you for your comment. I am having symptoms that align more with adrenal issues or possibly some form of POTS. I was just curious because I know these types of tumors can also cause the symptoms I experience, but that they are rare.

I had no noticeable symptoms. As I was shaving, I found a small lump at the back edge of my jaw, just behind my ear lobe. It was so small that I didn't pay much attention. Two or three weeks later it was noticeably larger, so I made an appointment with my general practitioner. He put me on a broad spectrum antibiotic for 10 days, during which time the lump continued to grow. He referred me to an otolaryngologist (head and neck doctor). There was another wait before seeing him, and he referred me to a surgeon for a needle biopsy. Another wait for the appointment, then another wait for results. It was diagnosed as a malignant carotid-body ganglioma. They referred me to a cancer treatment center, another wait, but I finally go there in two days. During all of that time, the little pea-size tumor has grown to about an inch and a half, and I have started having night sweats that soak my pillow and sheets. I hope to find out what the treatment will consist of, and what the side effects might be like. I have done a lot of searching online, and seen incidence rates ranging from 1/30000 to about 3/ 1,000,000. Men, like myself, are 1/2 as likely as women to have it. Of the ones who have it, it is malignant about 10-20% of the time. So what are the odds of me having what I have? Not much. I have been through too much in my 74 years to be worried now. But I never have liked to be kept in suspense.

The reason I went to my doctor was because I was so tired that I was having a hard time functioning. She felt the lump in my neck during her exam. I had thought it was just a swollen lymph node. CT scan and ultrasound showed the tumor. In looking back, for over a year, when I rolled over to my left side in bed I had a strong nauseous feeling that went away when I rolled back. Also I was in the ER a few months before diagnosis because I felt like I was having a heart attack. I now think I ate or drank something that restricted my airway. Combined with the restriction the tumor was also doing, it made it more difficult to breathe which caused me to panic.

Hello. Just curious if you had any symptoms that led to your diagnosis, and if so, what they were.

I know that every patient is different, treatments are different, and people respond differently. I was interested in your comment about recovery, how long it took. It must have been very debilitating while it lasted. I'm sure my doctor will have a lot of information for me when I see him on the 10th. I've been through so many things in my life that I don't worry much about anything any more, just take care of whatever comes whenever it arrives.

I appreciate your comments. My tumor is malignant, but I'm not worried. I have heart failure and should have died 20 years ago. But here I am, just past normal life expectancy for an American male. It ain't over yet.

I am so sorry you are dealing with this! Most paragangliomas are not malignant so it would be wise to also meet with a doctor that is not an oncologist but who has dealt with more paras. These tumors behave differently than others and most doctors with experience with them do NOT do biopsies prior to removal as they get angry. They are rare. Mine was thought to be a carotid body tumor, but during surgery it was discovered it was vagal. I had a cardiac surgeon as well as an ENT for my surgery December 2016 at Mayo in Rochester. They were a great team! I’m pretty much fully recovered. I can try to answer any questions you might have. I wish you the best of luck!

Hello puddknoker, I am sorry for the news you received last week, I totally feel for you.
I had mine removed in Mayo Clinic Jacksonville in Dec 2018, had a very difficult 18 month recovery but after 3.5 years I am 85% recovered and leading a normal life.
How can I help you ? let us know your concerns and questions and we will try to give you our best input to help you.
Bye for now

Welcome, @puddknocker. I can imagine you have lots of questions. I moved your message to this existing discussion:
– Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/

I did this so you can meet other members like @northwoodsbarb @labgirl57 @hdanielle62000 @sharik @patriciagsr @tenclawz @cootiesgirl1 and more who have experience with paraganglioma.

Paraganglioma is a type of neuroendocrine tumor that forms near certain blood vessels and nerves outside of the adrenal glands. You may be interested in following the discussions in the Neuroendocrine Tumors (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

As you prepare for your meeting with the oncologist, I suggest keeping pen and paper (or notes on your phone) handy to jot down questions as they come to you. Here's a few that I would ask:
- What are my treatment options?
- What tests will I have to determine more about the paraganglioma and my treatment options?
- What are the expected benefits, risks and side effects of treatment?

What questions would you add?