HPV+ with possible met in liver

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Donsie1
Donsie1 Member Posts: 3
in Head and Neck Cancer #1

Hello - I am new here though have been reading a lot of past threads over the past few weeks. My Partner has been diagnosed with HPV+ tonsil squamous cell. His PET and an ultrasound showa possible met in liver, which he will have biopsied this week. We understand this would be very unusual and would change his treatment plan and prognosis significantly. Is there anyone else who has experienced this and/or any advice on how we can make sure he is getting the most aggressive treatment possible? He is 59, healthy and strong and he wants to FIGHT this. One Dr he met with the other day was very hopeless about his odds (if the liver spot is malignant) and so I guess I’m looking for a little bit of hope and advice if anyone out there has a similar story. Treatment of some sort depending on biopsy results is scheduled to start on May 7.

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited April 2018 #2
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    well, well, well, oh well. You need good information.

    Donsie1,

    Good Sunday morning to you and welcome to the H&N forum (with some side adventures to other locations in the body). You are correct, very unusual indeed. My sister is a doctor in viro-biology and worked daily with the HPV for over 8 years and retired recently.  She has repeatedly told me that the hpv likes a certain cell type and that is why the virus sets up shop in the tongue, tonsils, lady parts, etc.  It would be uncharacteristic of the same hpv from the tonsils to be found in the liver, BUT we will go with that.  Have they determined that these are the same cancer?

    I am with your partner and want to fight this cancer with whatever means available to me.  There should be a number of ideas.  You (partner) need to seek out 2nd and 3rd and 4th opinions to determine the best path.  Hopefully, someone on here can jump start  your research (it happens).

    I did no help much, but my heart is with you on your journey through this morass of health, cancer, hpv, liver, doctors, family, work, friends and everything to do with life in general.

    Cloudy in Oregon (Willamette Valley). High in the 50’s today.

    Matt

  • Donsie1
    Donsie1 Member Posts: 3
    edited April 2018 #3
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    CivilMatt said:

    well, well, well, oh well. You need good information.

    Donsie1,

    Good Sunday morning to you and welcome to the H&N forum (with some side adventures to other locations in the body). You are correct, very unusual indeed. My sister is a doctor in viro-biology and worked daily with the HPV for over 8 years and retired recently.  She has repeatedly told me that the hpv likes a certain cell type and that is why the virus sets up shop in the tongue, tonsils, lady parts, etc.  It would be uncharacteristic of the same hpv from the tonsils to be found in the liver, BUT we will go with that.  Have they determined that these are the same cancer?

    I am with your partner and want to fight this cancer with whatever means available to me.  There should be a number of ideas.  You (partner) need to seek out 2nd and 3rd and 4th opinions to determine the best path.  Hopefully, someone on here can jump start  your research (it happens).

    I did no help much, but my heart is with you on your journey through this morass of health, cancer, hpv, liver, doctors, family, work, friends and everything to do with life in general.

    Cloudy in Oregon (Willamette Valley). High in the 50’s today.

    Matt

    Good suggestions

    Thank you Matt! We are getting things in gear to get multiple  after reading your response. Hope you had a great Sunday.

  • MGC
    MGC Member Posts: 72 Member
    #4
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    SCC

    It seems to early to say about the the liver by ultrasound. In fact I never even had an ultra sound. My very first ct scan (and only) showed a spot on liver and a spot on kidney and multiple nodules on lunges. Bottom line be patient and get MRI etc for better test results. I have had multiple MRI's and PET's since. My doctors treated me for the cancer they knew I had in my throat. The spots elsewhere were nothing as they monitored them through treatment. Its 8 years later now and NED. So many people get chopped on these days for nothing imo.

    To be totally honest with you the biggest thing I have learned here on these boards in 8 years is how many people get treated wrongly. Good luck and be positive. Pray

     

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