After Stage 4 HPV 16 Throat Cancer Surgery, Extensive Chemo & Radiation now 2 months out dr. says ha

dougslittlelady
dougslittlelady Member Posts: 1
in Head and Neck Cancer #1

My boyfriend was diagnosed with Stage 4 throat cancer from HPV 16 (oral sex) just like Michael Douglas, which I understand has a totally different prognosis (better) than acfrom smoking.  He's about 2 months out of the extensive radiation and chemo with all those awful side effects - he had them all - his doctors ran a scan and found two solid masses - one in his liver and one in his kidney and want to do a biopsy and surgery to rewhmove.  I'm very concerned because I've read that there's a lot of false positives with these scans - that you should wait at least 6 months to take any action like surgery.  Has anyone else had this happen?  Is it a side effect from some medicine or has it really spread now?  Thank you so much.  He just lost his brother two weeks ago at home, met with his dad's team of drs today who told him to make funeral arrangements for his Dad now too and to top it all off when his home health nurse came yesterday she told him death always seems to come in 3!  Can you believe the insensitivity?  Further, he had lost a lot of weight and looked like walking dead and had just put on 10 lbs this week and was feeling good about himself for the first time when she asked if he was over 65 - he said no - she said Really? like she was surprised he was younger - he's 57. This treatment ages you - anyway, I'm hoping to get some positive info to give him.  Thanks

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Welcome to our little

    home away from home....sorry you've found a need to find us, but so glad you did!!  Your boyfriend has had a rough time all the way around....treatment isn't easy for sure....but losing a brother, and now his dad being very sick is a lot to shoulder.

    It is true that there can be false positives on PET scans, tho for some reason, I always thought they would be in the head and neck area because of damage done from radiation....

    If it were me, and there were findings of tumors on the liver and kidneys, I'd get in and get the biopsies done.....no way would I wait another 4 months for another scan.  These tumors might not have anything at all to do with his head and neck cancer. 

    The home health nurse sounds like a nurse Rachett wannabe.....yes the treatment for HNC does age one, all the weigh loss and stress....but once he gains his weight back and starts getting truly good rest, he'll look and feel like he did before.

    There'll be other people answering who are more knowledgable than I am on false positives, and even the possibilities of his throat cancer spreading to liver and kidneys.....hang on till they see your post.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    welcome

    dougslittlelaldy,

    Welcome to the H&N forum, so sorry you find the need to be here.

    First off,  at 2 months post many of us were not looking our best (I felt like I just got run over by a train).   Next I am surprise the eyes to thighs” pretreatment scan did not detect activity.   As for hpv, it prefers certain cell types, like the tongue and tonsils.  I don’t know about the masses found, but I would opt to have them checked.  I would avoid the insensitive nurse as much as possible.

    Try to stay positive and keep healing.

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    #4
    CivilMatt said:

    welcome

    dougslittlelaldy,

    Welcome to the H&N forum, so sorry you find the need to be here.

    First off,  at 2 months post many of us were not looking our best (I felt like I just got run over by a train).   Next I am surprise the eyes to thighs” pretreatment scan did not detect activity.   As for hpv, it prefers certain cell types, like the tongue and tonsils.  I don’t know about the masses found, but I would opt to have them checked.  I would avoid the insensitive nurse as much as possible.

    Try to stay positive and keep healing.

    Matt

    Biopsy

    A biopsy will tell whether the cancer is same. I believe it is most common for head & neck cancer to mets in lungs or bones if it is going to happen. I had a recurrence that remained in head & neck region. It was biopsied and found to be from the original site SCC in my jaw. On the other hand, my brother was told he had kidney cancer that moved to his lungs and was therefore stage 4.  Biopsies showed they were two separate primary cancers, both stage one. Both treated accordingly and he has been cancer free 3 years now. Very glad to hear they are doing biopsies so he is properly treated. 

    As for the insensitive nurse, simply let the service know that she is not a good match and ask to have another nurse assigned.

    Prayers sent your way.

    Candi

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    i can't believe all your

    i can't believe all your boyfriend has been thru and is now facing.  I'm very sorry for him.  I hope you are able to get some answers here but if it were me, i'd have the biopsies.  saying prayers for a good outcome.  let us know what you find out.  we'll all be praying for the best.

    God bless you and your boyfriend,

    dj

     

  • donfoo
    donfoo Member Posts: 1,773 Member
    #6
    Welcome

    Sorry you are here but glad you are here. Great place to get first hand information and ideas and tips. The golden rule is it is not cancer until a biopsy says it is. Press on getting the biopsy and surgery scheduled sooner rather than later.  Even though he is two months out and weak, his doctor can advise if he able now or may have to wait.

    Good luck,

    Don

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Welcome...

    Sorry for the battle....

    The false scans you hear of most often aren't usually in the areas of concern to you... They are usually associated in the H&N area which received the greatest damage from rads, and chemo reactions... 

    I'm not saying that anything is a certainty though...

    I would definitely have the MD's pursue further testing, biopsy , etc... to the masses. Hopefully they will turn out as something other than what you fear.

    Thoughts & Prayers,

    John

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