Esthesioneuroblastoma; Olfsctory Neuroblaatoma

VitorBr
VitorBr Member Posts: 2 Member
in Head and Neck Cancer #1

Hello everyone. I saw that it has a long time that no one post about Esthesioneuroblastoma; Olfsctory Neuroblaatoma here.

Does anyone have more experience to share?


I was diagnosed in may 2024. Had endoscopic surgery (not clear about clear margins) + 30 RT sessions. Kadish B Hyamis 3 no metastasis. Waiting for 1st MRI next week.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member
    edited November 14 #2

    VitorBr, Welcome to the CSN Head and Neck discussion forum.

    I have not personally dealt with your type of cancer esthesioneuroblastoma, but can imagine the difficulty of treatment, that we all share.

    Hello and sorry you had to go through this difficult time in your life.

    You are now in the club no one wants to join but just sorta ended up there.

    You are correct there doesn't seem to be much posting for Esthesioneuroblastoma.

    I did find this one main thread on this site that is at least 9 pages long….

    https://csn.cancer.org/discussion/155606/esthesioneuroblastoma

    And here is a thread from the Mayo Clinic site that is at least 3 pages long…

    https://connect.mayoclinic.org/discussion/head-and-neck-radiation-side-effects/

    I hope you can find something helpful in either of these threads and I Wish You The Very Best.

    Our motto here is "(NEGU) Never Ever Give Up"

    Take Care, God Bless,

    Russ

    I highly recommend you check out the "Superthread" at the top of the Head and Neck page as it is loaded with links and info to help you.

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  • MGE 1111
    MGE 1111 Member Posts: 3 Member
    #3

    The surgery is key to this disease Was diagnosed in Dec 2015 Surgery in March 2016 at MD Anderson in Houston by Dr Ehab Hanna (ENT) and Dr Raza (Nuerosurgeon). They are the best at this disease and also had endoscopic removal of a fist sized tumor that had gotten into skin of brain 10 hour surgery Kadish C Grade 1-2 No metastasis Then 30 days TX- radiation treatment by Dr Gardner Did the gold standard photon radiation The newer proton radiation available that’s less impactful does not do as well in large cavities like this sinus cancer I met a gal and stayed in touch that had this disease that wanted less radiation impact so she chose proton treatment and she had recurrence and had another surgery for lymph nodes removal. But she also chose not to do the preventative radiation of the neck. Worried more radiation can cause cancer My Doctors recommended getting the neck radiated and I did that in case some cancer had gotten into the neck lymph nodes. Glad I did that. You don’t want this disease to get south of the neck as things get much more challenging as Chemo doesn’t do as well I hear with this disease. Also realize you have cancer and need to kill it So wasn't worried more radiation might cause cancer I have cancer! :)
    I’ve been clear now ever since surgery March of 2025 will be 9 years all clear Dr Hanna said I’m the largest he has removed and he has done hundreds I cannot speak highly enough of the doctors and staff and the facilities there at MD Anderson should you ever have the need to reach out to them The clear margins is an important thing to find out It means they got the tumor and then some so there is less risk of recurrence In some cases they cannot get clear margins because the tumor is touching something they shouldn’t remove

    I pray your results are good I traveled quarterly to Houston for 5 years for MRIs, Cat scans and occasional PET scans and meet with my doctors to keep an eye on things and catch a change early, if any. Then went to 2x per year until 1x per year in year 8

    I do not have serious side affects other than a lot of nasal crusting due to no mucous membranes left that requires nasal flushing with distilled water and Neil Med sinus rinse packets at least once per day but best to do twice daily I use the bottle not the tea pot type it’s better

    Prayers for good outcome for you

    Other lessons learned……don’t be in a rush to get the tumor out as it’s a slow grower I took 3 months to find the best doctors as the best surgical removal is key to beating this disease And do what the doctors tell you to do. Also don’t believe everything you read as it’s probably old news. Takes years to get info published. Some of what you read I know is scary in medical terms like survival rate, etc But this is beatable

    Sincerely,

    Mark

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