Neuroendocrine Carcinoma, Small Cell Type (Sinus)

famfrench
famfrench Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
I was originally diagnosed with Esthesioneuroblastoma on 12/15 but now find it was misdiagnosed and I actually have Neuroendocrine Carcinoma, Small Cell Type. I have been told it is even more rare than Esthesio. Has anybody had any experience in this?
I am again looking for answers!

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi famfrench
    Sorry I can’t help with this as I know little about this type of Cancer, I did see others here on CSN with the same just can’t remember where I saw it, old age and radiation I guess.

    Take care and I pray that the Lord will lead you to someone who can help.
  • dadnukum
    dadnukum Member Posts: 1
    #3
    Small Blue Cell Neuroendocrine tumor in sphenoid sinus
    My wife is recovering from chemo and radiation to treat this incredibly rare cancer. I don't know where you live, but I would suggest Dr. Peter Costantino, St Lukes/Roosvelt Hospital in NYC. He did the initial surgery and referred us to Dr. Kenneth Hu, at Beth Israel for radiation. She's been in remission for over six months now.

    Having SNEC as a primary site in the sinuses is even more rare. These doctors see most of these cases.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #4
    dadnukum said:

    Small Blue Cell Neuroendocrine tumor in sphenoid sinus
    My wife is recovering from chemo and radiation to treat this incredibly rare cancer. I don't know where you live, but I would suggest Dr. Peter Costantino, St Lukes/Roosvelt Hospital in NYC. He did the initial surgery and referred us to Dr. Kenneth Hu, at Beth Israel for radiation. She's been in remission for over six months now.

    Having SNEC as a primary site in the sinuses is even more rare. These doctors see most of these cases.

    famfrench
    I urge you to find the right Drs. to deal with this- might be a critical issue, you know. Do not know where you are located, but hope you are near a major C treatment center, or your Drs. are in communications with the right Drs. to deal with this- suggest you see that this becomes fact.

    my best wishes for success

    kcass
  • Lbp
    Lbp Member Posts: 2
    #5
    dadnukum said:

    Small Blue Cell Neuroendocrine tumor in sphenoid sinus
    My wife is recovering from chemo and radiation to treat this incredibly rare cancer. I don't know where you live, but I would suggest Dr. Peter Costantino, St Lukes/Roosvelt Hospital in NYC. He did the initial surgery and referred us to Dr. Kenneth Hu, at Beth Israel for radiation. She's been in remission for over six months now.

    Having SNEC as a primary site in the sinuses is even more rare. These doctors see most of these cases.

    Your wife
    I just found your post while searching for information on this super rare cancer. My father was diagnosed a year ago with the same exact cancer and is also being treated by dr costantino and dr Lou Harrison at beth Israel. He finished treatment 6 mo ago but his recent scans came back with some spots that were unclear and now they have to perform a biopsy. I am feeling very dejected because everywhere we turn all we hear is how aggressive and poor the prognosis is for this type of cancer. I'm wondering how your wife is doing and how her treatment progressed? I really hope she is doing well!!!!
  • Lbp
    Lbp Member Posts: 2
    #6
    dadnukum said:

    Small Blue Cell Neuroendocrine tumor in sphenoid sinus
    My wife is recovering from chemo and radiation to treat this incredibly rare cancer. I don't know where you live, but I would suggest Dr. Peter Costantino, St Lukes/Roosvelt Hospital in NYC. He did the initial surgery and referred us to Dr. Kenneth Hu, at Beth Israel for radiation. She's been in remission for over six months now.

    Having SNEC as a primary site in the sinuses is even more rare. These doctors see most of these cases.

    your wife
    I just found your post while searching for information on this super rare cancer. My father was diagnosed a year ago with the same exact cancer and is also being treated by dr costantino and dr Lou Harrison at beth Israel. He finished treatment 6 mo ago but his recent scans came back with some spots that were unclear and they just performed a biopsy and it looks like the cancer has returned. I am feeling very dejected because everywhere we turn all we hear is how aggressive and poor the prognosis is for this type of cancer. I'm wondering how your wife is doing and how her treatment progressed? Have you found any particular treatment to work better than others? I really hope she is doing well!!!!
  • coyotemist
    coyotemist Member Posts: 7
    #7
    Hello, new here!
    My husband
    Hello, new here!

    My husband survived this 25 years ago. He was a kiddo, and as rare as it is, it was even rarer at that time. He was treated with surgical resection and 7 weeks of radiation. He continues to be cancer free in this area.

    I hope you are doing well.

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