Malignant carotid body tumor--new member

SisterElias
SisterElias Member Posts: 9
in Head and Neck Cancer #1

 

Hello, new friends. I am facing surgery in a month or so. Although I live in NJ, my doctors are all at Columbia-Presbyterian in NYC. They're all specialists with an impressive number of successful resections under their belts.

My tryst with CBT (Carotid Body Tumor) began in February. I went into the hospital with some cellulitis and came out with a CBT! (My doctor noticed the bulge in my neck and ordered an MRI and a CT scan with a radioactive shot beforehand.) None of the surgeons in my local hospital in NJ felt even remotely comfortable doing the surgery, so I went to NYC. The neurologist sent me to the ENT surgeon and he sent me to an endocrinologist, who sent me to a cardiologist, who sent me to a hematologist/oncologist. Since I live in NJ, it costs me $300 each time I have to go into the city. It's tough, because I'm 72, disabled with a TBI (traumatic brain injury), morbidly obese, allergic to most antibiotics, and living on S/S!

I learned I had cancer after a gallium PET scan. The tumor is about 3x6 cm, but the scan also revealed several tiny nodules in the upper lobe of each lung. My surgeons don't plan to do anything about them yet. I would love to hear from anyone who has had to deal with this same configuration. I have read up on CBTs in the professional literature, but the rarity of malignant CBTs means that reliable, recent articles are not that common, and group studies include fewer than 100 patients.

This is my first post to this discussion group. I hope I can count on good advice and support from others with CBTs. I ask your prayers, please. Thanks--may God bless you all. Sister Elias

--more to come--

 

Comments

  • Pclark21st
    Pclark21st Member Posts: 126
    #2
    Dear Sister Elias.  I know

    Dear Sister Elias.  I know nothing about CBTs but I do know the importance of getting in with the best cancer center available.  They need time to decide what treatment is the best and that takes a little time but you need to always be your best advocate and dont be afraid to push them.  I also know that many of the cancer centers have a resource person who can direct you to the programs that might help with travel expenses, free lodging, etc..  Good luck with everything

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #3
    SisterElias I'm Not Familiar

    With CBT's either but it sounds like you were referenced to different doctors quite a bit and it seems you may have ended up with just the right doctor. I am just welcoming you as a new member and wishing you the best and certainly hope you can defeat these cancers in your body.

    I did a search and came up with this I hope it helps--

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2982199/

    And here is my search with the results and it seems to be some sites talking about success in treating CBT's but some sites stress the seriousness of the area it is in but there seem to be a decent amount of positives so check it out and God Bless--

    https://www.google.com/search?client=firefox-b-1-d&q=Carotid+Body+Tumor

     

  • caregiver wife
    caregiver wife Member Posts: 234
    #4
    CBT

    There has been very little discussion of CBT on this message board.  Much of the treatment is very similar, however.  Husband's recurrence of throat cancer was wrapped around his carotid.  And, he also had small tumors in his upper left lung.  He eventually had embolisation of carotid and chemo.  His throat cancer went back into remission.  Sending prayers your way.

    Crystal

  • SisterElias
    SisterElias Member Posts: 9
    #5
    caregiver wife said:

    CBT

    There has been very little discussion of CBT on this message board.  Much of the treatment is very similar, however.  Husband's recurrence of throat cancer was wrapped around his carotid.  And, he also had small tumors in his upper left lung.  He eventually had embolisation of carotid and chemo.  His throat cancer went back into remission.  Sending prayers your way.

    Crystal

    CBT

    Thanks so much for your input and your prayers, Crystal.

    Sister Elias

  • SisterElias
    SisterElias Member Posts: 9
    edited August 2019 #6
    wbcgaruss said:

    SisterElias I'm Not Familiar

    With CBT's either but it sounds like you were referenced to different doctors quite a bit and it seems you may have ended up with just the right doctor. I am just welcoming you as a new member and wishing you the best and certainly hope you can defeat these cancers in your body.

    I did a search and came up with this I hope it helps--

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2982199/

    And here is my search with the results and it seems to be some sites talking about success in treating CBT's but some sites stress the seriousness of the area it is in but there seem to be a decent amount of positives so check it out and God Bless--

    https://www.google.com/search?client=firefox-b-1-d&q=Carotid+Body+Tumor

     

    CBT

    Thanks very much for taking the time to send me the links. God bliss you.

    Sister Elias

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #7
    Carotid Surgery

    Sister Elias,

    I had Carotid Body surgery to remove a tumor that they thought was benign. It ended up being a secondary tumor from NPC (NasoPharyngeal Cancer) which was in my left nasal passage. (They told me that Cancer rarely started in the neck ... but tended to move there from somewhere else.

    Anyway, I have finished all radiation and chemo treatment, and now I'm feeling better every day.

    I wish you all the best luck, and I hope your treatment (if needed) goes very well. The treatment can be a challenge, but the goal is to recover decades of living.

    My advice is to do your best to keep your spirits, and sense of humor working; accept all well wishes and prayers, and tell the important people in your life that you love and appreciate them!

    You WILL get through this!!

    Best Wishes,

    Motorcycleguy 

  • SisterElias
    SisterElias Member Posts: 9
    #8
    motorcycleguy said:

    Carotid Surgery

    Sister Elias,

    I had Carotid Body surgery to remove a tumor that they thought was benign. It ended up being a secondary tumor from NPC (NasoPharyngeal Cancer) which was in my left nasal passage. (They told me that Cancer rarely started in the neck ... but tended to move there from somewhere else.

    Anyway, I have finished all radiation and chemo treatment, and now I'm feeling better every day.

    I wish you all the best luck, and I hope your treatment (if needed) goes very well. The treatment can be a challenge, but the goal is to recover decades of living.

    My advice is to do your best to keep your spirits, and sense of humor working; accept all well wishes and prayers, and tell the important people in your life that you love and appreciate them!

    You WILL get through this!!

    Best Wishes,

    Motorcycleguy 

    CBT

    Hi Guy!

    Thanks so much for your message. It was just what I needed today. God bless you always.

    Sister

  • SisterElias
    SisterElias Member Posts: 9
    #9
    Clinical trials for Lanreotide and Axitinib. How do I choose?

    Hello to all.

    As it happens, resecting my Carotid Body Tumor right now is a bad option. The type of CBT I have, called a glomus vagale, involves the vagus nerve. A group of specialists reached a consensus that surgery will inevitably sever the nerve permanently.

    Two different clinical trials have been explained thoroughly to me. Both of these drugs are already being used to treat other types of cancer. These trials are being made to see if they are at all effective in treating CBTs. 

    If anyone has used either of these meds and would like to respond privately about their experience, I would welcome the contact. I have a lot of info to gather before I make my decision.

    Blessings of physical, mental, and spiritual healing to all!

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