Carotid Body Tumor

ValerRose
ValerRose Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
I'm 29 years old, 4 months pregnant, and I have just been at least preliminarily diagnosed with a carotid body tumor. I say preliminarily because the diagnosis was arrived at after an ultrasound, and I'm waiting on referrals to talk to specialists. So I guess my guess is that if it's NOT a carotid body tumor, it's something similar as I'm sure my carotid artery was visualized. I do know I'm in for a slew of more tests. My husband is in the military so our medical coverage is through that.

I've been doing my best to educate myself this weekend. The General Practioner overseeing my OB care was the one who has been overseeing the first few tests after I reported the lump in my neck and who mentioned this diagnosis to me. He had never heard of or seen this kind of tumor and was literally plugging it into search engines as he talked to me (not so comforting!).

I've learned that it's very rare, that surgery is recommended and that the surgery involved is very, very delicate. I've also learned that this sort of tumor is malignant in only 12% of the cases, but to find out the surgery above must be performed.

In searching (and searching and searching) for any information I could find, I've read a few posts here. They were from some time ago but I am so hoping that someone may still be here who has been through this or something similar and can help point me in the right direction for more information as well as advise me as to how to find a surgeon who has dealt with this and done it darned well! I'm in the Seattle area. Obviously, being pregnant adds quite a bit to my anxiety.

I have sooo many questions and very few answers so far...

Comments

  • Kimba1505
    Kimba1505 Member Posts: 557
    #2
    Hope it is CBT
    ValerRose,
    I only know that I had myself believing my partner Mark had a carotid body tumor and even told the ENT to do the ultrasound to diagnose it. If you had an ultrsound and they are saying CBT, my guess is that is what it is. I also did extensive research, and the only way to distinguish the CBT mass from others is by ultra sound. Apparently it has a very specific "grainy", speckled quality to the image.
    My partner instead was diagnosed with squamous cell carcinoma of the tonsil.
    My prayers are with you for the lesser diagnosis and that you will have no more need for this message board, except to tell us it is a CBT and you will be on another less difficult path. I know any diagnosis while pregnant is scarey, but CBT is better than some.
    My best to you, and I hope there is good support for you while your husband is away.
    Kim
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
    valeRose, I'm very sorry to
    valeRose, I'm very sorry to hear of your news. I can't offer any info as I'm not familiar with that type of cancer. I really just want to welcome you to the network and tell you that I will put you in my prayers. I'm sure someone will be able to help you with your questions. If you do have cancer you will find this site very helpful. Again, I'm sorry you had to come here but glad you did. Take care.
    God Bless you,
    debbie
  • ValerRose
    ValerRose Member Posts: 6
    #4
    Just to add--I lost my Mom
    Just to add--I lost my Mom to Stage IV Lung Cancer five years ago. I've had some experience with really mean cancers, and I am keeping this in perspective from that point of view. All the same, I am scared. The surgery involved sounds as I said, quite delicate and involved. Malignancy is not ruled out. This is very, very rare. There are just a lot of variables that I'm very unsure about. I don't want my posting my questions to seem insensitive to those of you who are suffering from disease that have tough prognoses to beat, and as I said I am doing my best to keep it all in perspective. I am just at a loss as to where to find information.
  • Kimba1505
    Kimba1505 Member Posts: 557
    #5
    ValerRose said:

    Just to add--I lost my Mom
    Just to add--I lost my Mom to Stage IV Lung Cancer five years ago. I've had some experience with really mean cancers, and I am keeping this in perspective from that point of view. All the same, I am scared. The surgery involved sounds as I said, quite delicate and involved. Malignancy is not ruled out. This is very, very rare. There are just a lot of variables that I'm very unsure about. I don't want my posting my questions to seem insensitive to those of you who are suffering from disease that have tough prognoses to beat, and as I said I am doing my best to keep it all in perspective. I am just at a loss as to where to find information.

    Sad to hear about your Mom.
    ValerRose,
    I am very sad to hear about the passing of your mom. As you become a mom you with value her even more.
    You are not insensitive to post here. Anyone with a Head and Neck situation is wise to check in here. It is a tremendously informative, supportive, and caring place.
    Please find the best medical care that you can. I live outside of Philadelphia and am taking Mark to the University of Pennsylvania. Dr. Weinstein is his surgeon who is the first to use a robot (TOR) for head and neck surgeries. It may be worth exploring if the the CBT surgery is so delicate. The robot can do many things that the human hand cannot; and the robot can see things the human eye cannot. I know Dr. Weinstein has trained other surgeons across the US...it just might be worth looking into.
    We here, have a beatable cancer. One just has to go through a brutal treatment process to get there. Again, don't worry about being insensitive. Ask any question you have.
    Kim
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    ValerRose said:

    Just to add--I lost my Mom
    Just to add--I lost my Mom to Stage IV Lung Cancer five years ago. I've had some experience with really mean cancers, and I am keeping this in perspective from that point of view. All the same, I am scared. The surgery involved sounds as I said, quite delicate and involved. Malignancy is not ruled out. This is very, very rare. There are just a lot of variables that I'm very unsure about. I don't want my posting my questions to seem insensitive to those of you who are suffering from disease that have tough prognoses to beat, and as I said I am doing my best to keep it all in perspective. I am just at a loss as to where to find information.

    ValerRose, I too am sad to
    ValerRose, I too am sad to hear about your mom. I know how hard that is as I lost my mom to breast cancer 33 yrs ago. It also saddens me to know that you are so scared and have so many questions. It is terrible what this horrible disease does to us but please know that you will win this battle. Yes, it will be a long, hard road, but you can do it. Please hang in there and come here anytime to ask questions, vent, cry, get angry, or anything else that will help you thru the rough moments. That is what we are here for and each of us has been there and done that. You will be in my prayers. Take care.
    God Bless you,
    debbie
  • hollyshoe
    hollyshoe Member Posts: 3
    #7
    CBT
    Just found this post. It's been 18 months since you posted...just wondering how things turned out? I had a CBT removed Jan 2006. I'm happy to share details if interested.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    hollyshoe said:

    CBT
    Just found this post. It's been 18 months since you posted...just wondering how things turned out? I had a CBT removed Jan 2006. I'm happy to share details if interested.

    Hi Holly
    ValerRose has not posted here in a long time so I am not too sure what happened with her, I do hope she did well in treatment. I see where you have the same thing my problems are with the Carotid Sinus, damage by radiation. I have problems with High & low blood pressure can you shed some light on what you do for this.

    PS: Also we Welcome you here to CSN hope you can stay and become a part of it
    Hondo
  • ValerRose
    ValerRose Member Posts: 6
    #9
    hollyshoe said:

    CBT
    Just found this post. It's been 18 months since you posted...just wondering how things turned out? I had a CBT removed Jan 2006. I'm happy to share details if interested.

    You asked back in November,
    You asked back in November, but I just now it saw your question. ;)

    Things turned out well, at least so far. At the recommendation of several people I met online, after I had my baby I went to the National Institutes of Health to be part of Dr. Karel Pacak's Pheochromocytoma and Paraganglioma protocol and to have my tumor removed. They took good care of me and now I am kind of a 'hybrid patient' getting follow up care at both the NIH and the University of Washington Hospital.

    Also, for those who are interested, there is a very active Facebook group for Pheo/Para here:

    https://www.facebook.com/groups/pheoparasupportgroup/

    I've gotten a tremendous amount of support from the people there, tons of information, and it's because of the people there, I don't feel so "rare."

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