HPV inconclusive

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Just got what I thought was my final diagnosis today but despite biopsy staining for HPV, test came back as inconclusive. Dr says it is very likely to be HPV, started in tonsil, now in left side lymph node, I’m 58 and healthy ( don’t smoke or drink). 
if it is HPV related then it would be T2N1M0 but T4 if non HPV. The treatment is the same so am I just over thinking and over complicating ?

  • Hi Villanelle 

    I had my left tonsil and associated neck lump biopsied.... first lot of biopsies were inconclusive.... second lot subsequently taken... this came back as T2N1M0 Tonsil cancer HPV16+.... chemoradio treatment....circa 90% cure rate....as for non HPV I believe the cure rate is lower.... treatment? Not sure.

    Take care and best of luck 

    Peter 

  • Hi the treatment is the same the cure rate for non HPV is lower. HPV is the most likely if you're a non smoker non drinker. Can they re run the test.hpv driven tumours are on the increase but if course none of us in her can give you a diagnosis. Whats yiur oncologist s view ?

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

  • Hi Vilanelle

    If it is any consolation to you my jaw cancer was not related to HPV and I had the standard radiotherapy treatment as well as ops.My last op was in 2022 and I am doing fine.  Don't know if it is any different for tonsil cancer but as you say the treatment is the same. 

    Lyn

    Sophie66

  • Hi Lyn

    Everything is a consolation Heart️ Thank you and glad to hear you are doing fine.

  • Hi Hazel

    Thanks for replying. I hope to see the oncologist very soon. The ENT dr, who I have seen twice now is sure it is HPV and thinks it should come back confirmed when re tested but you know how it is when are brains get thinking/ speculating etc.I’m just going to focus on getting through the treatment … that should keep me occupied .

    Best Wishes

    Ali aka Vilanelle

  • Hi Peter

    Thanks for replying and sharing a similar inconclusive HPV story. The treatment is the same, chemo radio, so at this point I’m just going to focus on that. 
    No doubt I shall  have many questions when it starts.

     Best Wishes

    Ali aka Vilanelle

  • Hi Ali

    I finished chemoradio June 2023....30 radio and 4 chemotherapy ...all  the posters on the forum have been on the treatment journey .... keep us updated on your progress ....always someone about.

    Peter 

  • if it is HPV related then it would be T2N1M0 but T4 if non HPV. The treatment is the same so am I just over thinking and over complicating ?

    Hi again.
    Yes treatment is the same. Are you having 6 or 7 weeks of RT? They might just give you that extra week. You could ask your oncologist if they would do a more definitive test which is looking for HPV DNA rather than the simpler staining the slide for P16

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Vilanelle.

    My first biopsy from lymph nodes was inconclusive.  But they re-checked twice and then confirmed it was HPV 16 +. I was slightly different as no primary found although my ENT consultant was convinced it was in my tonsils.  Staged at T0 N2 M0.  So went on to have a bilateral tongue mucosectomy, bilateral tonsils removed and lymph nodes 2-4 in right side of neck.  Then 6 weeks radio and 3 chemo.  I too was 59 fit, non smoker and drinker.

    Treatment finished October 23.

    Good luck with your treatment and take care.