Carotid body tumors and follow-up

kristab
kristab Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
I have had surgery for bilateral carotid body tumors or paragangliomas. I was wondering if anyone has any advice on what I should be watching for in terms of this showing up anywhere else. After researching on my own, I am now finding that I should be doing follow-up care. Anyone with any advice, please let me know. I am a 39 yr. old female, with a sister who has also had a carotid body tumor. Thank you for any help or suggestions. Krista B.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to consider contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and may be able to assist youwith your question. They can be reached at 1-800-227-2345.

    There are a number of CSN members with head and neck cancer. Some have completed a member profile and created a personal web page so you can find them by entering keywords such as "carotid" or "paraganglioma" in the text box next to SEARCH near the top of each page. You can refine your search by clicking on the categories right underneath your first list. There are also members who have probably dealt with the same type of diagnosis. You may want to send them an internal CSN e-mail with questions. Don't forget, you have to be logged in to access CSN member web pages.

    I hope this information has been helpful.

    Take care and be well,

    Dana
    CSN Dana
  • egge
    egge Member Posts: 20
    #3
    You should get PET scans and MRI every 6 months. My husband had a paranganglioma and they keep watching out but so far so good no recurrances. It is VERY important to keep an eye on it. He had had follow ups every 3 months, we are now on every 6 months, and so forth and so on. He is 36 years old. Email me if you need to talk some more. Also look for Tere B is the one that has help me so much with the info.
  • egge
    egge Member Posts: 20
    #4
    egge said:

    You should get PET scans and MRI every 6 months. My husband had a paranganglioma and they keep watching out but so far so good no recurrances. It is VERY important to keep an eye on it. He had had follow ups every 3 months, we are now on every 6 months, and so forth and so on. He is 36 years old. Email me if you need to talk some more. Also look for Tere B is the one that has help me so much with the info.

    This is our website:
    http://djrsegge.tripod.com/
    Where was your tumor located?
    God Bless
    Jessica
  • TereB
    TereB Member Posts: 286 Member
    #5
    Hi Kristab,
    Sorry to hear you had a carotid body tumor. I have a glomus jugular tumor, which is a little different but the same type. When did you have surgery?

    You need a long-term follow-up. This is a periodic physical examination of the head and neck plus MRI and CT scans to monitor changes, if any. Since your sister also had a carotid body tumor, it could be familial and that is why it is so important to do long-term follow-up. Research about familial paragangliomas is being done in Univ of Pittsburgh School of Medicine. Let me know if you are interested and I will send you their email address and telephone number.

    I have to run, have appointment for test. Will write more later.

    All the best,
    TereB
  • kristab
    kristab Member Posts: 6
    #6
    TereB said:

    Hi Kristab,
    Sorry to hear you had a carotid body tumor. I have a glomus jugular tumor, which is a little different but the same type. When did you have surgery?

    You need a long-term follow-up. This is a periodic physical examination of the head and neck plus MRI and CT scans to monitor changes, if any. Since your sister also had a carotid body tumor, it could be familial and that is why it is so important to do long-term follow-up. Research about familial paragangliomas is being done in Univ of Pittsburgh School of Medicine. Let me know if you are interested and I will send you their email address and telephone number.

    I have to run, have appointment for test. Will write more later.

    All the best,
    TereB

    Hi TereB
    I had my first surgery in 2001 and the second in 2003. I contacted Dr. Baysal from the Pittsburgh School of Medicine, and he said he is now interested in non-familial tumors. I really appreciate everyone's advice, I was never told to have any sort of follow-up. I thought once they were removed everything was fine. I now have a reoccurence of the tumor on the left side. I know that I will have to much more on top of having this checked. I also have the unfortunate luck to live in Colorado, which also is perfect for the growth of these types of tumors.

    Thanks for your help,

    Kristab
  • TereB
    TereB Member Posts: 286 Member
    #7
    kristab said:

    Hi TereB
    I had my first surgery in 2001 and the second in 2003. I contacted Dr. Baysal from the Pittsburgh School of Medicine, and he said he is now interested in non-familial tumors. I really appreciate everyone's advice, I was never told to have any sort of follow-up. I thought once they were removed everything was fine. I now have a reoccurence of the tumor on the left side. I know that I will have to much more on top of having this checked. I also have the unfortunate luck to live in Colorado, which also is perfect for the growth of these types of tumors.

    Thanks for your help,

    Kristab

    Hi kristab,
    I had surgery in 1987. When the tumor grew again I was given a choice and I chose radiation because there were many things that could go wrong during that type of surgery and I also had small kids. Besides the first surgery was horrible, lasted 11 hours and recovery took a long time. I am happy with my decision. That tumor that grew again after surgery has not caused any problems since radiation and last year it shrunk some, all by itself.

    I have not been in contact with Univ of Pitts. for a while so I didn't know they were no longer interested in familial glomus tumors. The person in charge was a different doctor. I suppose they couldn't find enough patients with familial tumors, he, he, he. There is another doctor there, not doing the research, he is an ENT and he is very nice and helpful. Let me know if you are interested. The follow-up is important because this type of tumor tends to recur. It is also slow growing and sometimes it goes dormant. I have a lot of info from the internet about glomus and carotid body tumors if you are interested.

    Are you seeing an ENT? What are the plans for the second tumor? Did it grow in the same place as the first one?

    Do you mean living in Colorado is bad for the tumor? Is it because of the altitude? If so, I'd like to tell you that I read that in only one place and I can tell you also that I am from Bogota, 8,000 ft above sea level, that is high, and I am the only one in my family with that type of tumor. I don't think it has been proven that altitude promotes the growth of these tumors.

    I have that first tumor in my head, one metastases in neck, many along spine, pelvis and lungs. I've been havings MRI's since 1990 and CT scans since two years ago. With the tests they look for new tumors and measure each test against old one to see if there is any growth on the tumors. In spite of all the tumors I am doing OK, no pain at all, work and lead a pretty normal life.

    You can email me here at CSN if you have more questions or need information. I am in Houston, TX.

    God Bless,
    TereB
  • barosebud
    barosebud Member Posts: 12
    #8
    kristab said:

    Hi TereB
    I had my first surgery in 2001 and the second in 2003. I contacted Dr. Baysal from the Pittsburgh School of Medicine, and he said he is now interested in non-familial tumors. I really appreciate everyone's advice, I was never told to have any sort of follow-up. I thought once they were removed everything was fine. I now have a reoccurence of the tumor on the left side. I know that I will have to much more on top of having this checked. I also have the unfortunate luck to live in Colorado, which also is perfect for the growth of these types of tumors.

    Thanks for your help,

    Kristab

    Hi Kristab,

    I read your email. I'm not sure that living in Colorado will cause your tumor to grow or become malignant. The research I have read does suggest that this familial tumor can be linked to those who have might have had a hypoxic incident either due to high altitudes or medical reasons. It's a thought, but not neccesarily in all cases. I sent you a link to some research from UTMB Otolaryngology Department. You can read and do your own research...knowledge is power :)
    Beth
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #9
    Hi Krista,
    I had my right CBT excised in 1990, no follow up. In 2003 was diagnosed with wide spread mets from that CBT. Except for one small bout with leg pain that a short radiation treatment cured completely, I have led a full and asymptomatic life. This is only a slow moving annoyance that can be lived with for years, so don't waste any precious time worrying about it. Do your follow-up exams, do some research on your own, listen well to TereB's advice and live like there's nothing wrong. Dave
  • paraneck
    paraneck Member Posts: 2
    #10
    hi kristab, I have had a carotid body tumor removed from my left carotid artery 20 years ago, I have no carotid system on the left, so my right side is supplying the blood, I now have a carotid tumor on the right carotid artery and need to have it surgically removed. I would really like to find someone who has gone ahead with this surgery,with only one sided carotid flow. I also have two sisters who have had these, I would feel a lot better going ahead with this surgery, if I knew it was successful on someone else. Im really scarred that Ill have a stroke during surgery, Any info would be appreciated. Also if you have questions, I might beable to help you. I am a nurse and having this problem have done some research. Thankyou & God bless. In terms of symptoms to look for, if you have ringing in your ears, or hear your pulse in your ear, this would be a sign of one in the parotid area (around the ear). It is best to have a whole body MRI done yearly, to rule out any additional tumors. They usually appear on the vagus nerve, behind the eardrums, around the pharynx (throat) or the carotid arteries.
  • kristab
    kristab Member Posts: 6
    #11
    paraneck said:

    hi kristab, I have had a carotid body tumor removed from my left carotid artery 20 years ago, I have no carotid system on the left, so my right side is supplying the blood, I now have a carotid tumor on the right carotid artery and need to have it surgically removed. I would really like to find someone who has gone ahead with this surgery,with only one sided carotid flow. I also have two sisters who have had these, I would feel a lot better going ahead with this surgery, if I knew it was successful on someone else. Im really scarred that Ill have a stroke during surgery, Any info would be appreciated. Also if you have questions, I might beable to help you. I am a nurse and having this problem have done some research. Thankyou & God bless. In terms of symptoms to look for, if you have ringing in your ears, or hear your pulse in your ear, this would be a sign of one in the parotid area (around the ear). It is best to have a whole body MRI done yearly, to rule out any additional tumors. They usually appear on the vagus nerve, behind the eardrums, around the pharynx (throat) or the carotid arteries.

    I am wondering if anyone has had bilateral surgery, and is experiencing any adverse symptoms. I would really like to talk with someone who has had this surgery. After my first surgery I did not have the problems that I am experiencing now.
  • irinagem
    irinagem Member Posts: 2
    #12
    kristab said:

    I am wondering if anyone has had bilateral surgery, and is experiencing any adverse symptoms. I would really like to talk with someone who has had this surgery. After my first surgery I did not have the problems that I am experiencing now.

    bilateral carotid body tumor
    Hello!

    Please tell me if you had the second tumor resected and if so how are you feeling after the surgery. My husband (34 years old) did a surgery 3 years ago for resection of a carotid body tumor on the right side and about a week ago a new carotid body tumor on the left side was discovered. We have read some studies about baroflex failure syndrom and we really dont' know what decision to take. I would apreciate any additional information or advising. Thank you. My email adresss is irinazro@yahoo.com
  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    irinagem said:

    bilateral carotid body tumor
    Hello!

    Please tell me if you had the second tumor resected and if so how are you feeling after the surgery. My husband (34 years old) did a surgery 3 years ago for resection of a carotid body tumor on the right side and about a week ago a new carotid body tumor on the left side was discovered. We have read some studies about baroflex failure syndrom and we really dont' know what decision to take. I would apreciate any additional information or advising. Thank you. My email adresss is irinazro@yahoo.com

    Hi irinagem

    Welcome to the family here on CSN, this is a very old post and many of the people that started it are no longer here. You might do better starting a new post on this subject, I am sure you will get a lot of help.

    Take care and again welcome glad to have you here
    Hondo

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