Immunotherapy for esthesioneuroblastoma recurrence

11Balboa
11Balboa Member Posts: 13 Member
in Head and Neck Cancer #1

Hi, 

 My boyfriend has a second recurrence of esthesioneuroblastoma that is a new tumor , nickel sized, located between his nose and eye. Drs offered the big surgery taking out the eye, some bone and tissue with then a flap put in place for the hole . They offered hope that this would stave off another recurrence. Then the "main" dr advised against it saying it wasn't worth it because it will eventually come back...crushed our hope. Needless to say we are upset and confused because his PET scan shows no other sites of tumor. I think we should fight for the surgery ano deal with a recurrence when that happens. Drs now offering immunotherapy instead. I am wondering what anyone's opinion , experience, etc is with immunotherapy for this kind of cancer ...would you fight for the surgery? I know it is ultimately a personal decision..just getting thoughts and ideas, thanks.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #2
    Hello Balboa

    It seems you are in a situation of tough decisions.
    I am wondering why the difference the doctors wanting to operate and feel it would be successful without a recurrence yet the main doctor feels that a recurrence is definite?
    Why does he think it will come back.
    Why do the other doctors feel it is a good idea to operate?
    Even with the operation, it is a major thing he faces.
    The doctors that were going to operate, were they then going to follow up with radiation, or even could they?
    Or were they maybe going to follow up with immunotherapy?
    It seems I have more questions than answers.
    I think in your situation I would consider a second opinion at a major cancer center or teaching hospital if you are close enough to one and if not a second opinion somewhere where they deal specifically with this kind of cancer and situation especially since your doctors seem to be at odds over his treatment.
    The head and neck area contains a lot of our critical functions and the idea is to get it right the first time.
    Also if the immunotherapy route is taken as the main treatment or as a follow up here is a link to the National Cancer Institute covering  Immunotherapy quite extensively--
    https://www.cancer.gov/about-cancer/treatment/types/immunotherapy

    Wishing You The Best hope you can get this sorted out and figure out the best path to take-Take Care-God Bless-Russ

  • 11Balboa
    11Balboa Member Posts: 13 Member
    edited August 2021 #3
    wbcgaruss said:

    Hello Balboa

    It seems you are in a situation of tough decisions.
    I am wondering why the difference the doctors wanting to operate and feel it would be successful without a recurrence yet the main doctor feels that a recurrence is definite?
    Why does he think it will come back.
    Why do the other doctors feel it is a good idea to operate?
    Even with the operation, it is a major thing he faces.
    The doctors that were going to operate, were they then going to follow up with radiation, or even could they?
    Or were they maybe going to follow up with immunotherapy?
    It seems I have more questions than answers.
    I think in your situation I would consider a second opinion at a major cancer center or teaching hospital if you are close enough to one and if not a second opinion somewhere where they deal specifically with this kind of cancer and situation especially since your doctors seem to be at odds over his treatment.
    The head and neck area contains a lot of our critical functions and the idea is to get it right the first time.
    Also if the immunotherapy route is taken as the main treatment or as a follow up here is a link to the National Cancer Institute covering  Immunotherapy quite extensively--
    https://www.cancer.gov/about-cancer/treatment/types/immunotherapy

    Wishing You The Best hope you can get this sorted out and figure out the best path to take-Take Care-God Bless-Russ

    Thank you for your input. One

    Thank you for your input. One doctor felt since this cancer is so aggressive it may not be worth going through such a big surgery and have a recurrence come back right after. How can he know when there would be a recurrence, he doesn't, no one really knows. He had his lifetime doses of radiation with the initial tumor, it saved his life so far. He has been on a rollercoaster the past couple of days. After the drs talked amongst themselves they think they can now remove the tumor endoscopically and save the eye....there was a differing opinion on whether the tumor had entered the eye socket...they feel it hasn't reached there so will try and save the eye. They may do some chemo and/ or immunotherapy after. So, we are hopeful and in a better place mentally. I hope you are doing well yourself.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited August 2021 #4
    Well Balboa

    It sounds like you guys are on a little different course now and your docs are considering other options and now I can see some positives and things to provide a good outcome on this.
    I can tell you guys are feeling better about this and I certainly pray that they can remove the tumor and save the eye what a blessing that will be.

    Still Wishing You The Best-Take Care-God Bless-Russ

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