Newbies an introduction

Elisec Member Posts: 11


My husband was diagnosed with keratinizing squamous cell carcinoma (hpv negativ) about 6 weeks ago.  At the moment, he has unknown primary and to  is having a tonsilectomy  and neck dissection tomorrow at Vanderbilt. His radiologist does not want to "carpet bomb" his head if they can't find the primary and then will just watch him closely. So we will know more next week what the next steps will be.  We live about 3 hours from a proton facility so of need be, we can make that work.


  • CivilMatt
    CivilMatt Member Posts: 4,722 Member


    Welcome to the H&N forum, sorry that you qualify, but my primary concern is helping you in any way I can (or the H&N forum can).

    They don’t always find the (pesky) primary, but they go on to make your life right and cancer free.  The treatment plans are getting more refined daily so that they share only enough (surgery, rads & chemo) to do the trick.

    I recommend that your husband start drinking lots of water and swallowing often.  That was the best advice I took from this forum and I always remembered how to swallow.

    Something on your mind, ask away.


  • Kapital
    Kapital Member Posts: 52 Member
    edited May 2017 #3

    It was difficult to find the primary on my husband as well.  After having surgery to remove a "cyst" that wound up being a lymph node with metastatic CA, he had several scopes and multiple negative biopsies done.  He then had  exploratory surgery to find a primary site, which included a tonsillectomy, multiple biopsies and a laryngoscopy, which finally found the primary hiding behind his left tonsil.  Good luck with the upcomming surgery. It sounds like they are doing all they can to find a primary site. 

  • Chicklette
    Chicklette Member Posts: 225
    Unknown Primary

    My husband also has an unknown primary.  Had the tonsillectomy and tongue biopsy and still found nothing.  So, the treatment will be targeted at his tonsil beds and base of tongue.  He is HPV+ and the doctor said that the primary would be in one of those two places.  They will also radiate the lymph nodes in his neck; primarily on the left side Which is where he has the lump. He is currently in getting his final checks done before starting treatment on Monday.  Good luck to you and your husband on this journey!