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Carotid Body Tumor

merry2u
Posts: 4
Joined: Jan 2008

Hi,
I was just diagnosed with a carotid body tumor. I found this site by searching for information. From what I read most of these tumors are benign. Does anyone have any experience or insight that they would share?
I'm trying to do my homework and be prepared for whatever may come. Thanks for any input!

Merry

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I don't have any info for you on the carotid tumor. However, here is a link to another support website that someone recently shared with me. It gets lots of action. http://www.oralcancerfoundation.org/

I hope your tumor is benign! Keep us posted!

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Hi Merry,

I have no direct dealings with carotid tumors but will share my general thoughts with you if I may.
I found that doing research on the internet is a good thing but can scare the hell out of you for no good reason. I was sure my head was about to jump off my neck and run down the road whistling dixie by the time I got off the web, but no it never did. My best advise is to listen to your Doctor and when you think you have asked enough questions of him/her.......ask seven more! They are the bestest source of information for you, their patient. I have found many,many people that had the "exact same" cancer I did and have yet to speak to any two people that had the same treatment plan (and we are are still here so they all musta worked eh?)
Best of luck and welcome to the forums, please keep us posted on how it's going for you!

BILL
P.S. I have a sister named Merry as well so I will hold off on asking if your last name is Christmas!

cuzzy
Posts: 15
Joined: Sep 2007

I don't know what you mean by carotid body tumor, but I do know that I had a tumor wrapped around my carotid artery, the result of two earlier tongue cancers that the doctors thought had been taken care of. This cancer was misdiagnosed as heart problems because it couldn't be felt (even my ENT locally couldn't feel it), it caused me to pass out several times, and a PET scan a few months earlier had been clean...eventually, it was caught...the sooner you get things taken care of, the better...let us know how you're doing...

TereB
Posts: 288
Joined: May 2003

I have a similar tumor to yours. Mine is a glomus jugulare tumor which is more or less the same type as the carotid body tumor, only slightly different location. Yes, carotid body tumors are usually benign and are rare. They are also slow growing.

Usually these tumors are treated with surgery and radiation afterwards. Mine was diagnosed in 1987.

Are you seeing and ENT doctor? Sometimes you get embolization and angiography before surgery. The tumors are vascular. A lot of things depend on size of tumor, hope yours is very small.

When you are checking in the internet, also check for paragangliomas. Another place for info is the University of Pittsburgh Cancer Institute - www.upci.upmc.edu/research/clinical/oral/paraganglioma.html

When I was first diagnosed there was little information around but now it is easier not only to find info but also a doctor familiar with this type of tumor. Make sure your doctor has experience with this.

Where do you live? If you have any specific questions, let me know.

All the best,
TereB

merry2u
Posts: 4
Joined: Jan 2008

Thank you all for your input and thoughts. I have been doing some research and yes it can be very scary but I'm also keeping it in prospective. I am very familiar with the diagnosis of a condition. I have a 4 yr old that had a kidney transplant at 2 yrs old so I know all about waiting for another test and another. I've been playing the waiting game for 4 years now and it looks like it might be a few more years.

TereB, Thank you for your reply. I was diagnosed by an ENT and have been referred to an ENT surgeon within the same office. I have an appt on Jan 14th with her. I have had a CT scan, MRA, and I go for a MRI today. These have been with and without contrast. My tumor is about 3.5 cm x 1.5. From what I've read, anything over 5 cm is classified as large. I'm hoping that mine is still on the small side.
I'm also wanting to get a second opinion after my appt on Monday. I have Kaiser Insurance and they don't have a huge number of specialists so I'm hoping they refer me to someone else. I live just outside of Atlanta and I'm hoping to find someone familiar with this. I'm finding that to be hard without personally calling each office and asking. Is there a website where this information can be obtained? I am willing to travel to make sure I have a great, experienced doctor. I don't want to be a guinea pig for someone who wants to get this surgery under their belt. I will definitely check the website you sent.

Thanks so much for the helpful tips.

Merry

TereB
Posts: 288
Joined: May 2003

Hi Merry,

I think it is good that you are keeping some perspective even though it is pretty scary when you are first diagnosed. Keep it up and don't lose hope.

I'm sorry about your child having a kidney transplant and I hope he/she is doing well.

CT scans and MRIs with and without contrast are very good. I've been having them for years for follow-ups.

I think a second opinion is good if you don't know if your first doctor has sufficient experience. Read my Web page here and you'll know what I mean. Also an ENT surgeon with experience will be aware of how vascular these tumors are and will be prepared. I don't know if there is a website for this, but if there was, how would you know it is true?

I can recommend my own ENT who is very nice and knows a lot about these tumors; he actually wrote one of the first papers ever written on them. He is Dean of Medicine at Baylor. I trust him completely and I like that he always tells you the truth and choices you may have. Maybe he can recommend a doctor near to where you live.

Dr. Bobby Alford
Neurosensory Center of Houston
Institute for Head and Neck Surgery
6501 Fannin, Room NA102
Houston, TX 77030
Tel: 713-798-5900 Fax: 713-798-3403
Email: balford@bcm.tmc.edu

There is another ENT at Univ. of Pittsburgh who I emailed years ago looking for answers. At that time they had a paraganglioma program and were doing research. He was kind enough to email me with answers and I recommended him to two different people later on, both with carotid body tumors. He corresponded with them and helped them. One of them went to see him later on. I do not know him personally but he is nice.

Dr.Eugene N. Myers
Univ. of Pittsburgh Cancer Institute
Tel: 412-647-2111
email: myersen@upmc.edu

Whichever doctor you decide on, always ask questions, keep yourself informed and take part in decisions about your treatment.

I have many metastases but it doesn't have to be like that for you. My tumors sometimes go dormant or shrink all by themselves, with no treatment and nobody knows why. I've been told I am rare among the rare.

There is more info now than when I was first diagnosed and also treatments have improved. The last radiation I had was great, it was STRT (stereotactic radiation treatment) and my radiologist said it seemed to work better on glomus tumors. If you need radiation treatment, check it out with your radiologist.

If you need to talk or anything else, email me here and I will give you my email address. I don't write it here because google or other will pick it up and I will be flooded with emails from all over the world. It already happened once.

You and yours are in my prayers.
God Bless,
TereB

merry2u
Posts: 4
Joined: Jan 2008

Wow, you have been so helpful!!!!!!!! I've sent an email to both doctors hoping they know someone in Atlanta. If not, I am willing to travel.

I read your story and it sounds like you have been through the mill. I'm sorry that you have to go through so much. It seems like you are a very positive person and you handle whatever comes your way. I wish you a healthy future!

Thanks for asking about my son. He is doing GREAT!! His transplant has been wonderful! We still deal with issues but nothing like before. Since he's been transplanted, we have not been back to the hospital except for normal routine follow ups. God has been so good to us!!

I'll keep you posted on the progress and if I hear from the doctors.

Thanks again for your help.

Merry

merry2u
Posts: 4
Joined: Jan 2008

Bill,
Actually, my maiden is Christmas. My parents have a sense of humor:)

Merry

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