Carotid Paraganglioma

bellabella917
bellabella917 Member Posts: 4
edited November 2017 in Head and Neck Cancer #1

Hello everyone,

 

I was recently diagnosed with a right carotid paraganglioma (unfortunately won't know if its benign or malignant until they are able to surgically remove and do the biopsy, but fingers crossed and hoping for the best). Wanted to ask if anyone had gone through a similar case, if they had surgery, how they recovered, if they had any other treatment done and in general would love to have relevant information and to chat or hear about similar cases. Appreciate your time and help beforehand, and I'm looking forward to hearing from you

 

Isabella

Comments

  • caregiver wife
    caregiver wife Member Posts: 234
    edited November 2017 #2
    This is very rare diagnosis

    ... so don't know how many responses you will receive.  Husband had SSC throat cancer, with recurrence 5 years later.  This tumor completely engulfed his carotid artery.  I am happy to say, he has completely recovered and is now NED (no evidence of desease).

    Many here have had surgery of the neck region.  No two cases are the same as to the extent of surgery, so all recovery experiences are different.  Many here will be will to help as you go through your own personal journey.

    Sorry you are here, but so glad you have found this wonderful group to help you along the way.  We all have to learn the hurry up and wait game.  So, one day at a time is often the first advice you will hear.  Your treatment plan will depend on your surgery, so your doctors will be providing that information.  

    When will you be having your surgery?  I will be wanting to know how you progress.  

    Wishing you the very best!

    Crystal

  • caregiver wife
    caregiver wife Member Posts: 234
    #3
    paraganglioma

    I did a search and found several sites with information specific to this type of tumor, but I only found a few with support groups.  This is not considered to be a "Head and Neck" cancer, but I would expect others here to be willing to share their support of neck surgery recovery experiences.

    We all need a hand to hold, to know that others at least understand what we are experiencing.  I, honestly, did not find a good "paraganglioma" support group during my short search.

    So, here I am!  Willing to learn and share along the way!

    Crystal

  • bellabella917
    bellabella917 Member Posts: 4
    #4
    caregiver wife said:

    paraganglioma

    I did a search and found several sites with information specific to this type of tumor, but I only found a few with support groups.  This is not considered to be a "Head and Neck" cancer, but I would expect others here to be willing to share their support of neck surgery recovery experiences.

    We all need a hand to hold, to know that others at least understand what we are experiencing.  I, honestly, did not find a good "paraganglioma" support group during my short search.

    So, here I am!  Willing to learn and share along the way!

    Crystal

    Many thanks Crystal for your

    Many thanks Crystal for your kind words and good wishes. Will have surgery tomorrow and hopefully it will go well. Will let you know how it goes, hope your husband is doing well

  • caregiver wife
    caregiver wife Member Posts: 234
    #5
    Surgery

    Dear Bella,

    Saying a prayer, wishes you the very best for your surgery.  

    Hugs,

    Crystal

  • caregiver wife
    caregiver wife Member Posts: 234
    #6
    bellabella917 said:

    Many thanks Crystal for your

    Many thanks Crystal for your kind words and good wishes. Will have surgery tomorrow and hopefully it will go well. Will let you know how it goes, hope your husband is doing well

    Surgery

    Thinking about you often, hoping you are having a speedy recovery.

    Still here, still wishing the very best,

    Crystal

  • armana
    armana Member Posts: 97 Member
    #7
    caregiver wife said:

    This is very rare diagnosis

    ... so don't know how many responses you will receive.  Husband had SSC throat cancer, with recurrence 5 years later.  This tumor completely engulfed his carotid artery.  I am happy to say, he has completely recovered and is now NED (no evidence of desease).

    Many here have had surgery of the neck region.  No two cases are the same as to the extent of surgery, so all recovery experiences are different.  Many here will be will to help as you go through your own personal journey.

    Sorry you are here, but so glad you have found this wonderful group to help you along the way.  We all have to learn the hurry up and wait game.  So, one day at a time is often the first advice you will hear.  Your treatment plan will depend on your surgery, so your doctors will be providing that information.  

    When will you be having your surgery?  I will be wanting to know how you progress.  

    Wishing you the very best!

    Crystal

    HPV Status

    Crystal,

    I noticed your husband had a recurrence 5 years after the initial treatment; rare for Head and neck cancer and

    I was just wondering if his cancer was positive for the HPV virus.

    Thanks

  • caregiver wife
    caregiver wife Member Posts: 234
    #8
    armana said:

    HPV Status

    Crystal,

    I noticed your husband had a recurrence 5 years after the initial treatment; rare for Head and neck cancer and

    I was just wondering if his cancer was positive for the HPV virus.

    Thanks

    HPV status

    I have no idea!  I am a 16 year cancer survivor.  Husband's tumor was so HUGE by the time it was found, with his age and heart history, the outlook was very poor.  There weren't any treatment options to consider.  He was not a candidate for surgery or chemo.  We trusted the doc to go at it as aggressively as possible.  We just didn't even ask questions.  He is considered their "Miracle" by all the staff.  Seven years ago seems like AGES in terms of treatment for Head and Neck cancer!

    Crystal

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